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Help for Patients and Caregivers : Parkinson's Disease

What is Parkinson's Disease?
Common Symptoms
What Causes Parkinson's Disease?
Medications
Surgical Treatments
Role of the Patient
Caregiver Information
Additional Information


What is Parkinson's Disease?
Parkinson's disease belongs to a group of conditions called movement disorders. It is both chronic, meaning it persists over a long period of time, and progressive, meaning its symptoms grow worse over time.

Parkinson's disease occurs when a group of cells, in an area of the brain called the substantia nigra, that produce a chemical called dopamine begin to malfunction and eventually die. Dopamine is a neurotransmitter, or chemical messenger, that transports signals to the parts of the brain that control movement initiation and coordination. When Parkinson's disease occurs, for unexplained reasons, these cells begin to die at a faster rate and the amount of dopamine produced in the brain decreases. The four primary symptoms are:

  • tremor of the hands, arms, legs, jaw, and face;
  • rigidity or stiffness of the limbs and trunk;
  • bradykinesia or slowness of movement, and
  • postural instability or impaired balance and coordination.

If you have a question about Parkinson's disease, why not submit it to our medical experts and receive an email reply within 10 working days. To reach 'Ask the Expert', just click here. At this site you can also review our archive of hundreds of answers to questions about Parkinson's listed by category in our "Expert Resource Center".

Visit our "Publications & Videos" section to review a list of print and audio patient materials from the Parkinson's Disease Foundation that are available free of charge, or sign up to receive regular news and updates by mail and email. Click here to sign up.

As many as one million Americans suffer from Parkinson's disease. While approximately 15% of Parkinson's patients are diagnosed before the age of 40, incidence increases with age. The cause is unknown, and although there is presently no cure, there are many treatment options such as medication and surgery to manage the symptoms.
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Common Symptoms?
The symptoms vary from patient to patient and not every one is affected by all of them. In some people, the disease progresses quickly; in others it does not. The following are the most common primary symptoms of Parkinson's disease.

Tremor: In the early stages of the disease, about 70% of people experience a slight tremor in the hand or foot on one side of the body, or less commonly in the jaw or face. It appears as a 'beating' or oscillating movement and is regular (4-6 beats per second). Because tremor usually appears when the muscles are relaxed, it is called "resting tremor." This means that the affected body part trembles when it is at rest and not doing work and often subsides with action. The tremor often spreads to the other side of the body as the disease progresses, but remains most apparent on the original side of occurrence.

Rigidity: Rigidity or increased muscle tone means stiffness or inflexibility of the muscles. Normally muscles contract when they move, and then relax when they are at rest. In rigidity, the muscle tone of an affected limb is stiff. Rigidity can result in a decreased range of motion. For example a patient may not swing his or her arms when walking. Rigidity can also cause pain and cramps at the muscle site.

Bradykinesia: Bradykinesia is a slowing of voluntary movement. In addition to slow movements, a person with bradykinesia will likely also have incompleteness of movement, difficulty in initiating movements, and arrests of ongoing movement. Patients may begin to walk with short, shuffling steps (festination), which, combined with other symptoms such as loss of balance, increases the incidence of falls. They may also experience difficulty making turns or abrupt movements. They may go through periods of "freezing," which is when the patient is stuck and finds it difficult to stop or start walking. Bradykinesia and rigidity can occur in the facial muscles, causing a "mask-like" expression with little or no movement of the face. The slowness and incompleteness of movement can also affect speaking and swallowing.

There are many secondary symptoms of Parkinson's disease. These include stooped posture, a tendency to lean forward or backward, and speech problems, such as softness of voice or slurred speech caused by lack of muscle control. Non-motor symptoms also impact the life of a person with Parkinson's. A survey published in October 2003, "The Impact of Parkinson's Disease on Quality of Life" revealed that two of the top three most disabling symptoms for people with Parkinson's are non-motor symptoms, including loss of energy and pain. To review the results of this survey go to: http://www.amarinpharma.com/.

The following is a list of secondary symptoms of Parkinson's disease:

  • Speech changes
  • Loss of facial expression
  • Micrographia (small, cramped handwriting)
  • Difficulty swallowing
  • Drooling
  • Pain
  • Dementia or confusion
  • Sleep disturbances
  • Constipation
  • Skin problems
  • Depression
  • Fear or anxiety
  • Memory difficulties and slowed thinking
  • Sexual dysfunction
  • Urinary problems
  • Fatigue and aching
  • Loss of energy
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What Causes Parkinson's Disease?
Why an individual develops Parkinson's disease remains undetermined. The causes likely include both genetic and environmental factors. A variety of mechanisms that are believed to cause accelerated cell death have also been suggested, including oxidative stress, excitotoxicity and mitochondrial dysfunction. These are described below.

  • Genetics    About 15-25% of Parkinson's patients report having a relative with Parkinson's. Researchers have found a defective gene in some rare families, with a high incidence of Parkinson's disease. These rare cases have an inherited form of Parkinson's disease. Scientists have discovered several "Parkinson's genes" and there is conclusive evidence that genetics play a role in at least some patients. There appears to be a 2-3 fold increased risk of PD in first degree relatives compared to matched control populations. However, the majority of cases of PD still appear to be sporadic.
  • Environmental Factors    Some scientists have suggested that Parkinson's disease may occur when a toxin selectively destroys dopaminergic neurons. Scientists have known for a number of years of several toxins that can cause Parkinson's-like symptoms, such as MPTP. Several studies have suggested a link between rural living, herbicide use and exposure to pesticides as possible factors that may contribute to a person's developing Parkinson's. Some PWP's recall a time when they were exposed to chemicals, and believe this exposure may be a possible cause. Scientists are continuing to pursue these clues to establish more concrete linkages.

While the debate concerning environmental factors and genetics as causative factors in PD continues, there has been extensive investigation of the mechanisms involved in the cell death process. A number of cell death concepts have been put forward including, oxidative stress, mitochondrial dysfunction and excitotoxicity.

  • Oxidative damage    This theory suggests that free radicals - unstable molecules whose toxic effects are believed to be caused by oxidation - may contribute to cell death, thereby leading to Parkinson's disease. Oxidation is thought to cause damage to tissues, including neurons. In addition, antioxidant defenses appear to be markedly reduced in PD brains. In particular, reduced levels of glutathione (an acid which plays a role in the detoxification of harmful compounds) have been discovered. The cause of the deficiency and the potential role that antioxidants like glutathione play in the development of PD remain unresolved.
  • Mitochondrial dysfunction    The mitochondria are small bodies within cells that produce energy. They can be described as the 'power-house' of the cell. Scientific findings indicate a reduction in the function of mitochondria and this may play a role in PD.
  • Excitotoxicity    occurs when selected neurotransmitters in the brain get out of balance leading to cell death. This mechanism has been documented in Parkinson's and scientists believe that glutamate excitotoxicity is the main culprit within this mechanism. Finding a way to correct this imbalance may prevent be neuroprotective.
Most experts in the field share the opinion that Parkinson's is caused by a combination of genetic and environmental factors, and other contributing mechanisms of cell death. For regular updates on scientific discoveries about Parkinson's disease, see the PDF "Science Bulletin" in our News section of the PDF website by clicking here. Or subscribe to the "PDF News" our quarterly newsletter. To subscribe, click here.
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Medications for Parkinson's Disease
There are several symptomatic treatments for people with Parkinson's including medication, surgery, and physical therapy. The degree of success of each treatment varies among individuals, as does the length of time the treatment option remains effective.

Levodopa is a dopamine precursor, a substance that is converted into dopamine by an enzyme in the brain. The use of levodopa was a breakthrough in the treatment of PD. Unfortunately, patients experienced debilitating side effects, including severe nausea and vomiting. With increased dosing and prolonged use of levodopa, patients experienced other side effects including dyskinesias (spontaneous, involuntary movements) and "on-off" periods when the medication will suddenly start or stop working.

Check with a doctor before taking any of the following to avoid possible interactions: antacids, anti-seizure drugs, anti-hypertensives, anti-depressants and high protein food.

Combining Levodopa with Carbidopa (Sinemet) represented a significant improvement in the treatment of Parkinson's disease. The addition of carbidopa prevents levodopa from being metabolized in the gut, liver and other tissues, and allows more of it to get to the brain. Therefore, a smaller dose of levodopa is needed to treat symptoms. In addition, the severe nausea and vomiting often associated with levodopa treatment was greatly reduced.

Consult a doctor before taking any medications to avoid possible interactions. In particular, antacids, anti-seizure drugs, anti-hypertensives, anti-depressants and high protein food may adversely affect the function of Levodopa/carbidopa.

Stalevo (carbidopa, levodopa and entacapone) is a new (September 2003) combination tablet for patients who experience signs and symptoms of end-of-dose "wearing-off." The tablet combines carbidopa/levodopa (the most widely used agent for PD), with entacapone. While carbidopa reduces the side effects of levodopa, entacapone extends the time levodopa is active in the brain (up to 10 percent longer). The same drugs that interact with carbidopa/levodopa and entacapone interact with Stalevo.

Symmetrel (amantadine hydrochloride) is thought to work in PD because it has several actions. It activates both the release of dopamine from storage sites and possibly blocks the re-uptake of dopamine into nerve terminals. It also has a glutamate receptor blocking activity. Its dopaminergic actions result in its usefulness in reducing dyskinesia induced by levodopa. It is thus called an indirect-acting dopamine agonist, and is widely used as an early monotherapy (treatment of a condition by means of a single drug), with the more powerful Sinemet added when needed. Unfortunately, its benefit in more advanced PD is often short-lived, with patients reporting a fall-off effect.d

Symmetrel may interact with Cogentin (benztropine), Disipal (orphenadrine), Sinemet (levodopa), Artane (trihexyphenidyl), amphetamines and alcohol.

Anticholinergics (trihexyphenidyl, benztropine mesylate, procyclidine, etc.) do not act directly on the dopaminergic system. Instead they act to decrease the activity of another neurotransmitter, acetylcholine. There is a complex interaction between levels of acetylcholine in the brain and levels of dopamine. Many clinicians find that if an agonist or levodopa does not relieve tremor, then the addition of an anticholinergic drug is often effective. Adverse effects include blurred vision, dry mouth and urinary retention. These drugs may be contraindicated in older patients since they can cause confusion and hallucination.d

Check with a doctor before using anticholinergics with anti-histamines, Haldol, Thorazine, Symmetrel, Clozaril and alcohol.

Selegiline or deprenyl (Eldepryl) has been shown to delay the need for Sinemet when prescribed in the earliest stage of PD, and has also been approved for use in later stages to boost the effects of Sinemet. Eldepryl may interact with anti-depressants, narcotic pain killers and decongestants. Check with a doctor before taking any new medications.

Dopamine agonists are drugs that activate dopamine receptors directly, and can be taken alone or in combination with Sinemet. Agonists available in the United States include bromocriptine (Parlodel), pergolide (Permax), pramipexole (Mirapex) and ropinirole (Requip).

Consult a doctor before taking any of the following to avoid possible interactions: alcohol, anti-psychotics, medications that lower blood pressure, Navane (thiothixene), Taractan (chlorprothixene), Haldol (haloperidol), Reglan (metoclopramide), phenothiazines, thiozanthenes, cimetidine, phenothiazines, butyrophenones, Cipro and benzodiazepines.

COMT inhibitors such as tolcapone (Tasmar) and entacapone (Comtan) represent a different class of Parkinson's medications. These drugs must be taken with levodopa. They prolong the duration of symptom relief by blocking the action of an enzyme which breaks down levodopa.

*** Side Effects from Medications - Like the symptoms of PD themselves, the side effects caused by Parkinson's medications vary from patient to patient. They may include dry mouth, nausea, dizziness, confusion, hallucinations, drowsiness, insomnia, and other unwelcome symptoms. Some patients experience no side effects from a drug, while others may have to discontinue its use because of them.

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Surgical Treatments
Surgery is an option for patients to explore after they have had experience with medications and are no longer satisfied with the results. A patient should discuss surgery thoroughly with his or her neurologist before making any decision.

Two older, and somewhat outdated, lesioning procedures that provide relief from Parkinson's symptoms are pallidotomy and thalamotomy. Pallidotomy can alleviate rigidity and bradykinesia symptoms, and thalamotomy helps to control tremors. Doctors rarely perform either procedure because both permanently destroy parts of the brain and have serious side effects. The damage could make it impossible to perform surgeries that may become available in the future, such as brain tissue transplants.

Deep brain stimulation (DBS) , a safer and more effective surgery, has replaced these methods. It is a preferred surgical option because it has the same, if not better results than pallidotomy and thalamotomy. DBS also leaves open the possibility of other therapies, should they become available in the future. As with any surgical procedure, there are risks and side effects. The main benefit of DBS surgery is to reduce motor fluctuations i.e. the ups and downs caused by a decreasing effectiveness of Sinemet.

The electrode is usually placed on one side of the brain. The DBS electrode implanted in the left side of the brain will control the symptoms on the right side of the body and vice versa. In some cases, patients will need to have stimulators on both sides of the brain.

During surgery, a device is implanted to provide an electrical impulse to a part of the brain involved in motor function. This is often the subthalamic nucleus, in a deep part of the brain called the thalamus. During the procedure, electrodes are inserted into the targeted brain region using MRI and neurophysiological mapping to ensure that they are implanted in the right place. The electrodes are connected to wires that lead to an impulse generator or IPG (similar to a pacemaker) that is placed under the collarbone and beneath the skin. Patients have a controller, which allows them to verify whether the DBS is 'on' or 'off'. They can use this device to check the battery and to turn the device 'on' or 'off'. An IPG battery lasts for about 3 to 5 years and is relatively easy to replace under local anesthesia.

Patients considering one or another surgical procedure should discuss the options first with their movement disorder specialists and then with their families and/or caregivers.

For more information on DBS, order from PDF our comprehensive booklet "Surgery for Parkinson's Disease", written by our medical advisor Dr. Blair Ford. To order your free copy, send a request by email to This email address is being protected from spambots. You need JavaScript enabled to view it. . Or you can get information on the web by visiting these sites:

www.medtronic.com/UK/patients/neuro/brain_stimulation.html
www.clevelandclinic.org/neuroscience/treat/movement/dbs.htm
www.rewiredforlife.org
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Role of the Patient
Treating Parkinson's disease is not exclusively the doctor's job; there is much the individual can do to stay as well as possible for as long as possible. Regular exercise, being part of a support group, maintaining a healthy diet or taking part in a clinical trial are just some of the things you might consider.

Exercise: For people with Parkinson's, regular exercise and/or physical therapy are essential for maintaining and improving mobility, flexibility, balance, and a range of motion, and for warding off many of the secondary symptoms mentioned above. Exercise is as important as medication for the management of PD.

Support groups: For many people, these groups play an important role in the emotional well-being of patients and families. They provide a caring environment for asking questions about Parkinson's, for laughing and crying and sharing stories and getting advice from other sufferers, and for forging friendships with people who understand each other's problems.

Diet: There is no specific diet to prevent or slow Parkinson's but there are several suggestions to help manage the disease. A vegetable-rich diet may aid digestion and prevent constipation. Parkinson's patients should also take a balanced approach to protein intake because protein inhibits the absorption of levodopa in the gut. Avoiding high protein meals when taking levodopa helps prevent this potential problem. However, a patient should not make dietary changes without discussing this first with their doctor. Parkinson's disease nutrition author, Kathrynne Holden, offers several books, including "Eat Well, Stay Well" and "Cook Well, Stay Well" that provide beneficial eating and cooking tips. Copies can be ordered from Five Star Living, on (877) 565-2665 or at www.nutritionucanlivewith.com.

A Healthy Patient/Doctor Relationship: A neurologist can most effectively help a patient manage his or her Parkinson's if the neurologist and the patient have a good working relationship. Doctors need the patient to be honest, forthright, and inquisitive in order to give the best medical attention possible. Patients should also require that a doctor treat them in the same honest, open manner, engaging them in dialogue about the patient's experiences. Doctors can provide a wealth of information and suggestions for improving quality of life.

Physical, Speech and/or Occupational Therapy: These therapies can help Parkinson's patients control their symptoms and make daily life easier. Physical therapy may increase muscle strength and flexibility and decrease the incidence of falls. Speech therapy is available to increase voice volume and assist with word pronunciation. The Lee Silverman technique is a special speech therapy that can be very beneficial to people with Parkinson's - for further information see www.lsvt.org.

Occupational therapy affords patients alternative methods of doing tasks that they can no longer perform with ease. These options may give patients a stronger sense of control when living with Parkinson's disease, which seems to take control from them. The patient should ask a physician for recommendations if he or she does not provide them. These therapies may or may not be covered by insurance.

Clinical Trials: Getting involved in a clinical trial may be a way for a patient to feel empowered and help researchers understand more about Parkinson's disease in order to improve treatment options for this disorder. Increased clinical trial participation will result in a better understanding of the disease and will also help treatments that are in the research and developmental phases reach patients more quickly. A patient should understand what the trial entails and be educated about the patient's responsibilities and obligations. To find more information on the patient's role in clinical trials, visit www.ninds.nih.gov/parkinsonsweb/clinical_trials_info.htm.

For information on Parkinson's disease clinical trials, visit:
www.clinicaltrials.gov
www.centerwatch.com

To participate in an important survey about clinical trials, please click here.

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PD Caregiver Well-Being

What can friends and family of a person with Parkinson's do?

  • Stay educated about the person's condition and abilities and adapt accordingly.
  • Support environment and lifestyle changes that often need to be made by a person with Parkinson's disease.
  • Encourage medical consultation with a physician.
  • Request a referral for occupational therapy from a family physician to promote maximal capabilities in self-care, household tasks, and valued life activities.

Physical Health
Caregiving can be physically and emotionally draining, especially when caregiving duties are demanding and constant. PD caregivers provided an average of 96 hours of care per week to their care recipients. The vast majority (73%) reported significant health problems. The most prevalent health problems reported involved arthritis (27%), self-reported depression (26%), high blood pressure (23%), and heart trouble (15%). One-third of PD caregivers reported their overall health as fair (28%) or poor (5%), while nearly half of caregivers (46%) stated their health troubles were standing in the way of assuming an expanded caregiving role. Forty-eight percent stated their current health status was worse at the time of assessment than it had been five years earlier. One in five caregivers (20%) had at least three medical exams in the last six months.

Mental Health
PD caregivers experienced high levels of depression as illustrated by an average score of 19.88 on the CES-D3. In fact, 60% of this group scored 16 or higher on the CES-D questionnaire (26% of PD caregivers self-reported depression was a current health problem). Among PD caregivers, women scored significantly higher than men (t = -2.72, p< .01). Interestingly, depression scores did not differ significantly by ethnicity, but did differ by type of relationship between the caregiver and care recipient, albeit not significantly. Mothers and daughters of care recipients scored the highest of all relationship groups on the CES-D (34.5 and 22.0, respectively). PD caregivers were significantly more likely to demonstrate higher depression scores if their care recipients needed supervision with performing personal care tasks compared with PD.

3 Score of 16 or higher on the CES-D demonstrates evidence of clinically significant depressive symptoms. caregivers reporting other functional needs. Additionally, PD caregivers who reported their loved ones were either forgetting what day it was or were being argumentative or irritable, were significantly more likely to score high on the CES-D respectively than PD caregivers whose care recipient did not report these behaviors.

PD Caregiver Strain
More than one-third (38%) of PD caregivers reported the informal help and social support they were receiving was far less than they needed. When asked how burdened they felt in caring for their relatives, 28% of PD caregivers reported feeling “quite a bit” burdened while 16% reported feeling “extremely” burdened. Another 31% of PD caregivers reported feeling “moderately” burdened.

Perception of role
Generally, PD caregivers reported feeling confident in their caregiving role, as demonstrated by an average competency score of 21.4 out of a possible 27. A relatively small percent of caregivers responded “not at all” when asked if they know where and how to request help from others (12%). A majority of caregivers felt that they “somewhat” or “very much” received the emotional support they needed (81%) and were able to develop ways to manage the stresses of caregiving (83%).

Identified PD Caregiver Problems at Assessment
CRC Family Consultants reported the most common problems for PD caregivers at assessment were the need for respite (85%), emotional support (83%), and behavior management (32%). Figure 5 presents the current problems of PD caregivers upon completion of an assessment.

Services Planned for PD Caregivers

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American Parkinson Disease Association
1250 Hylan Blvd.
Suite 4B
Staten Island, NY 10305-1946
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http://www.apdaparkinson.org
Tel: 718-981-8001
800-223-2732
Calif: 800-908-2732
Fax: 718-981-4399

National Parkinson Foundation
1501 N.W. 9th Avenue
Bob Hope Research Center
Miami, FL  33136-1494
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http://www.parkinson.org
Tel: 305-243-6666
800-327-4545
Fla: 800-433-7022
Fax: 305-243-5595

Parkinson Alliance
P.O. Box 308
Kingston, NJ 08528-0308
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http://www.parkinsonalliance.net
Tel: 609-688-0870
800-579-8440
Fax: 609-688-0875

Michael J. Fox Foundation for Parkinson's Research
Grand Central Station
P.O. Box 4777
New York, NY 10163
http://www.michaeljfox.org
Tel: 212-509-0995

Parkinson's Action Network (PAN)
1000 Vermont Ave. N.W.
Suite 900
Washington, DC  20005
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http://www.parkinsonsaction.org
Tel: 800-850-4726 202-842-4101
Calif: 707-544-1994
Fax: 202-842-4105

Parkinson's Disease Foundation (PDF)
710 West 168th Street
New York, NY 10032-9982
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http://www.pdf.org
Tel: 212-923-4700
800-457-6676
Fax: 212-923-4778

Parkinson's Institute
1170 Morse Avenue
Sunnyvale, CA 94089-1605
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http://www.parkinsonsinstitute.org
Tel: 408-734-2800
800-786-2958
Fax: 408-734-8522

Parkinson's Resource Organization
74-090 El Paseo
Suite 102
Palm Desert, CA 92260-4135
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http://www.parkinsonsresource.org
Tel: 760-773-5628
310-476-7030
877-775-4111
Fax: 760-773-9803

Worldwide Education & Awareness for Movement Disorders (WE MOVE)
204 West 84th Street
New York, NY 10024
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http://www.wemove.org
Tel: 800-437-MOV2 (6682)
212-875-8312
Fax: 212-875-8389

Bachmann-Strauss Dystonia & Parkinson Foundation
Mt. Sinai Medical Center One Gustave L. Levy Place
P.O. Box 1490
New York, NY 10029
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http://www.dystonia-parkinsons.org
Tel: 212-241-5614
Fax: 212-987-0662

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CAREGIVER TIPS & INFORMATION:
10 Tips for Family Caregivers
Questions to Ask Your Healthcare Provider
How to Communicate with an Insurance Provider
Find a Doctor
Information on Seating & Mobility
Tips for Family Caregivers from Doctors
Care Management Techniques You Can Use
Compare Home Health Agencies in Your Area
Additional Resources

 


10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don’t delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
5. There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
6.Trust your instincts. Most of the time they’ll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
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Tips for Family Caregivers from Doctors

  • Write questions down so you won’t forget them
  • Be clear about what you want to say to the doctor. Try not to ramble.
  • If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
  • Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
  • Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
  • Recognize that not all questions have answers—especially those beginning with “why.”
  • Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
  • Appreciate what the doctor is doing to help and say thank you from time to time.
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Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is “yes,” you’re not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.

What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:

  • Gathering information from healthcare providers;
  • An assessment of your care recipient and the home environment;
  • Research into available public and/or private services and resources to meet your loved one’s needs; and
  • Ongoing communication between all parties to keep information up to date and services appropriate and effective.

Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one’s health and safety.

Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you’ll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control — a goal well worth working toward.

Educate yourself on the nature of the disease or disability with which you’re dealing. Reliable information is available from the health agency that deals with your loved one’s condition and the National Institutes of Health. When using the Internet, stick with wellknown medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.

Write down your observations of the present situation including:
  • Your loved one’s ability to function independently, both physically and mentally.
  • The availability of family and/or friends to form a support network to share the care.
  • The physical environment: Is it accessible or can it be adapted at reasonable cost?
  • Your other responsibilities — at work, at home, and in the community.
  • Your own health and physical abilities.
  • Your financial resources, available insurance, and existence of healthcare or end-of-life documents.

This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you’ve learned along the way.

Hold a family conference. At least everyone in the immediate family should be told what’s going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.

Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one’s care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.

Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you’ll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn’t family caregivers?

Start advance planning for difficult decisions that may lie ahead. It’s never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.

Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you’ll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.

Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.

Approach some of your hardest caregiving duties like a professional. It’s extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.

©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650

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Seating & Mobility - As a caregiver, you need to be very understanding to the individuals needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. Getting them involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manor. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.

How do you care for your mobility device?

The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.

When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
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Additional Resources

It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs such office on disabilities, elder affairs, or material and child health.

Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.

Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.

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Both Medicare and private health insurance plans pay for a large portion or sometimes even all costs associated with many types of medical equipment used in the home. This type of equipment is referred to as durable medical equipment or home medical equipment. The guide below will help you understand the Medicare guidelines related to home medical equipment. Most health insurance plans have similar rules to Medicare, but you should know that all private health insurance plans vary and the specific rules of your plan may differ from these Medicare guidelines. We accept most of the major health insurance plans. We would be happy to work with you and your insurance company to help you understand how your plan works as it relates to home medical equipment needed by you or a loved one.

Reference directory:

I. Guide to Medicare Coverage

Who qualifies for Medicare benefits?

  • Individuals 65 years of age or older
  • Individuals under 65 with permanent kidney failure (beginning three months after dialysis begins), or
  • Individuals under 65, permanently disabled and entitled to Social Security benefits (beginning 24 months after the start of disability benefits)

The Different Benefits of Traditional Medicare

  • Medicare Part A benefits cover hospital stays, home health care and hospice services
  • Medicare Part B benefits cover physician visits, laboratory tests, ambulance services and home medical equipment
  • While oftentimes you do not have to pay a monthly fee to have Part A benefits (you only have to pay money when you use the services), the Part B program requires a monthly premium to stay enrolled (even if you do not use the services). In 2011 that premium will range between $115.40 - $369.10 per month depending on your income. Typically, this amount will be taken from your Social Security check.
  • Medicare Part D offers optional program benefits that cover prescription drugs.
  • For more information about your benefits or making coverage decisions, you can visit the official website for Medicare benefits at www.medicare.gov.

What Can You Expect to Pay?

  • Every year, in addition to your monthly premium, you will have to pay the first $162 of covered expenses out of pocket for Part B services, and then 20 percent of all approved charges if the provider agrees to accept Medicare payments.
  • Unfortunately, your medical equipment provider cannot automatically waive this 20 percent or your deductible without suffering penalties from Medicare. They must attempt to collect the coinsurance and deductible if those charges are not covered by another insurance plan; however, certain exceptions can be made if you meet qualifying financial hardships established by your provider.
  • If you have a supplemental insurance policy, that plan may pick up this portion of your responsibility after your supplemental plan's deductible has been satisfied.
  • If your medical equipment provider does not accept assignment with Medicare you may be asked to pay the full price up front, but they will file a claim on your behalf to Medicare. In turn, Medicare will process the claim and mail you a check to cover a portion of your expenses if the charges are approved.

Other possible costs:

  • Medicare will pay only for items that meet your basic needs. Oftentimes you will find that your provider offers a wide selection of products that vary slightly in appearance or features. You may decide that you prefer the products that offer these additional features. Your provider should give you the option to allow you to privately pay a little extra money to get the product that you really want.
  • To take advantage of this opportunity, a new form has been approved by the Centers for Medicare and Medicaid Services (CMS) that allows you to upgrade to a piece of equipment that you like better than the other standard option you may otherwise qualify for. This form is known as the Advance Beneficiary Notice or ABN.
  • The ABN your provider completes for you must detail how the products differ, and requires a signature to indicate that you agree to pay the difference in the retail costs between two similar items. Your provider will typically accept assignment on the standard product and apply that cost toward the purchase of the fancier item, thus requiring less money out of your pocket.

Purpose of ABN

  • The Advance Beneficiary Notice of Non Coverage also will be used to notify you ahead of time that Medicare will probably not pay for a certain item or service in a specific situation, even if Medicare might pay under different circumstances. The form should be detailed enough that you understand why Medicare will probably not pay for the item you are requesting.
  • The purpose of the form is to allow you to make an informed decision about whether or not to receive the item or service knowing that you may have additional out-of-pocket expenses.

Durable Medical Equipment (DME) Defined

  • In order for any item to be covered under Medicare, it typically has to meet the test of durability. Medicare will pay for medical equipment when the item:
    • Withstands repeated use (excludes many disposable items such as underpads)
    • Is used for a medical purpose (meaning there is an underlying condition which the item should improve)
    • Is useless in the absence of illness or injury (thus excluding any item preventive in nature such as bathroom safety items used to prevent injuries)
    • Used in the home (which excludes all items that are needed only when leaving the confines of the home setting)

Understanding Assignment (a claim-by-claim contract)

  • When a provider accepts assignment, they are agreeing to accept Medicare's approved amount as payment in full.
  • You will be responsible for 20 percent of that approved amount. This is called your coinsurance.
  • You also will be responsible for the annual deductible, which is $162.00 for 2011.
  • If a provider does not accept assignment with Medicare, you will be responsible for paying the full amount upfront. The provider will still file a claim on your behalf and any reimbursement made by Medicare will be paid to you directly. (Providers must still notify you in advance, using the Advance Beneficiary Notice, if they do not believe Medicare will pay for your claim.)

Mandatory Submission of Claims

  • Every provider is required to submit a claim for covered services within one year from the date of service.

The role of the physician with respect to home medical equipment:

  • Every item billed to Medicare requires a physician's order or a special form called a Certificate of Medical Necessity (CMN), and sometimes additional documentation will be required such as copies of office visit notes from prior visits with your physician or copies of test results relevant to the prescription of your medical equipment.
  • Nurse Practitioners, Physician Assistants, Interns, Residents and Clinical Nurse Specialists can also order medical equipment and sign CMNs when they are treating you.
  • All physicians have the right to refuse to complete documentation for equipment they did not order, so make sure you consult with your physician about your need for medical equipment or supplies before requesting an item from a provider.

Prescriptions Before Delivery:

  • For some items, Medicare requires your provider to have completed documentation (which is more than just a call-in order or a prescription from your doctor) before they can deliver these items to you:
    • Decubitus care (wheelchair cushions and pressure-relieving surfaces placed on a hospital bed)
    • Seat lift mechanisms
    • TENS Units (for pain management)
    • Power Operated Vehicles/Scooters
    • Electric or Power Wheelchairs
    • Negative Pressure Wound Therapy (wound vacs)
  • Your provider cannot deliver these products to you without a written order from your doctor, nor can they get the documentation at a later date because if they do, Medicare can never make payment for those products to you or your provider. So please be patient with your provider while they collect the required documentation from your physician.

How does Medicare pay for and allow you to use the equipment?

  1. Typically there are four ways Medicare will pay for a covered item:
    • Purchase it outright, then the equipment belongs to you,
    • Rent it continuously until it is no longer needed, or
    • Consider it a "capped" rental in which Medicare will rent the item for a total of 13 months and consider the item purchased after having made 13 payments.
      • Medicare will not allow you to purchase these items outright (even if you think you will need it for a long period of time).
      • This is to allow you to spread out your coinsurance instead of paying in one lump sum.
      • It also protects the Medicare program from paying too much should your needs change earlier than expected.
    • If you have oxygen therapy, Medicare will make rental payments for a total of 36 months during which time this fee covers all service and accessories.
      • Beyond the 36 months (for a period of 2 additional years), Medicare will limit payments to a small fee for monthly gas or liquid contents and a limited service fee to check the equipment every six months.
  2. After an item has been purchased for you, you will be responsible for calling your provider anytime that item needs to be serviced or repaired. When necessary, Medicare will pay for a portion of repairs, labor, replacement parts and for temporary loaner equipment to use during the time your product is in for servicing. All of this is contingent on the fact that you still need the item at the time of repair and continue to meet Medicare's coverage criteria for the item being repaired.

In some parts of the country, a new program called Competitive Bidding will require you to obtain certain medical equipment from specific, Medicare-contracted suppliers in order for Medicare to pay. If you are located in a city where the program is in effect, you will need to obtain the following items from a contracted supplier:

  • Oxygen, oxygen equipment, and supplies
  • Standard power wheelchairs, scooters, and related accessories
  • Complex rehabilitative power wheelchairs and related accessories (Group 2 only)
  • Mail-order diabetic supplies
  • Enteral nutrition, equipment, and supplies
  • Continuous Positive Airway Pressure (CPAP) devices and Respiratory Assist Devices (RADs), and related supplies and accessories
  • Hospital beds and related accessories
  • Walkers and related accessories
  • Support surfaces (Group 2 mattresses and overlays in Miami only)

To find out if your zip code is affected by Competitive Bidding, call 1-800-MEDICARE (1-800-633-4227). You may also visit Medicare.gov and lookup suppliers in your area by zip code (a notice will appear if your area is subject to Competitive Bidding). If medical equipment is marked with an orange star, it will need to be provided by a contracted supplier.

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II. Medicare Coverage for Specific Types of Home Medical Equipment

BiLevel Devices/Respiratory Assist Devices

  • For a respiratory assist device to be covered, the treating physician must fully document in your medical record symptoms characteristic of sleep-associated hypoventilation, such as daytime hypersomnolence, excessive fatigue, morning headaches, cognitive dysfunction, dyspnea, etc.
  • A respiratory assist device is covered if you have a clinical disorder characterized as (I) restrictive thoracic disorders (i.e., progressive neuromuscular diseases or severe thoracic cage abnormalities), (II) severe chronic obstructive pulmonary disease (COPD), or (III) central sleep apnea (CSA) or Complex Sleep Apnea (CompSA). If you are diagnosed with Obstructive Sleep Apnea, see the coverage criteria for Positive Airway Pressure Devices below.
  • Various tests may need to be performed to establish one of the above diagnosis groups.
  • Three months after starting your therapy, both you and your physician will be required to respond in writing to questions regarding your continued use along with how well the machine is treating your condition.

Breast Prostheses

  • Breast Prostheses are covered after a radical mastectomy. Medicare will cover:
    • One silicone prosthesis every two years or a mastectomy form every six months.
    • As an alternative, Medicare can cover a nipple prosthesis every three months.
    • Mastectomy bras are covered as needed.
  • There is no coverage for replacement prostheses due to wear and tear before the specified time frames. However, Medicare will cover replacement of these items due to:
    • Loss
    • Irreparable damage, or
    • Change in medical condition (e.g. significant weight gain/loss)
  • You are allowed only one prosthesis per affected side, others will be denied as not medically necessary even if attempting asymmetry (an ABN should be provided in this circumstance).
  • Mastectomy sleeves which are used to control swelling are not covered in the home setting because they do not meet Medicare's definition of a prosthesis; however, it is possible that they may be covered under the hospital per diem if you request one during your hospital stay.
  • A mastectomy bra is covered if the pocket of the bra is used to hold a covered prosthesis or mastectomy form.

Cervical Traction

  • Cervical traction devices are covered only if both of the criteria below are met:
    1. You have a musculoskeletal or neurologic impairment requiring traction equipment.
    2. The appropriate use of a home cervical traction device has been demonstrated to you and you are able to tolerate the selected device.

Commodes

  • A commode is only covered when you are physically incapable of utilizing regular toilet facilities. For example:
    1. You are confined to a single room, or
    2. You are confined to one level of the home environment and there is no toilet on that level, or
    3. You are confined to the home and there are no toilet facilities in the home.
  • Heavy-duty commodes are covered if you weigh over 300 pounds. Commodes with detachable arms are covered if your body configuration requires extra width, or if the arms are needed to transfer in and out of the chair.

Compression Stockings

  • Gradient compression stockings worn below the knee are covered only when used for the treatment of open venous stasis ulcers. They are not covered for the prevention of ulcers, prevention of the reoccurrence of ulcers, or treatment of lymphedema or swelling without ulcers.

Positive Airway Pressure Devices (CPAPs and Bi-Level Devices for Obstructive Sleep Apnea)

  • Continuous Positive Airway Pressure (CPAP) Devices are covered only if you have obstructive sleep apnea (OSA).
  • You must have an overnight sleep study performed in a sleep laboratory or through a special, in-home sleep test to establish a qualifying diagnosis of Obstructive Sleep Apnea.
  • Medicare will also pay for replacement masks, tubing and other necessary supplies.
  • After the first three months of use, you will be required to verify if you are benefiting from using the device and how many hours a day you are using the machine. Per Medicare, a face-to-face visit with your physician that documents an improvement of your symptoms is required no sooner than 31 days and no later than 91 days from the set-up date. A data report from your sleep equipment which documents that the PAP has been used for at least 4 hours per night on 70% of nights during a 30-day consecutive period is required.
  • If the CPAP device is not working, or if you cannot tolerate the CPAP machine, your doctor may also try to use a different device called a Bi-Level or a Respiratory Assist device, and Medicare can consider this for coverage as well.
  • Talk with your provider if you are having problems adjusting to the therapy. There are a lot of variations that can make the therapy more comfortable for you.

Diabetic Supplies

  • For diabetics, Medicare covers the glucose monitor, lancets, spring-powered lancing devices, test strips, control solution and replacement batteries for the meter.
  • Medicare does not cover insulin injections or diabetic pills unless covered through a Medicare Part D benefit plan.
  • Diabetics can obtain up to a three month supply of testing materials at a time.
  • Medicare will approve up to one test per day for non-insulin dependent diabetics and three tests per day for insulin-dependent diabetics without additional verification of need.
    • If you test above these guidelines, you are required to be seen and evaluated by your physician within six months prior to receiving your initial supplies from your provider.
    • In addition, you must send your provider evidence of compliant testing (e.g. a testing log) every six months to continue getting refills at the higher levels.
  • If at any time your testing frequency changes, your physician will need to give your provider a new prescription.

Glasses

  • Medicare covers one complete pair of glasses after the last cataract surgery. These can include:
    • frames
    • two lenses
    • tint, anti-reflective coating, and/or UV (when the doctor specifically orders these services for a medical need)

Hospital Beds

  • A hospital bed is covered if one or more of the following criteria (1-4) are met:
    1. You have a medical condition which requires positioning of the body in ways not feasible with an ordinary bed. Elevation of the head/upper body less than 30 degrees does not usually require the use of a hospital bed, or
    2. You require positioning of the body in ways not feasible with an ordinary bed in order to alleviate pain, or
    3. You require the head of the bed to be elevated more than 30 degrees most of the time due to congestive heart failure, chronic pulmonary disease, or problems with aspiration. Pillows or wedges must have been considered and ruled out, or
    4. You require traction equipment which can only be attached to a hospital bed.
  • Specialty beds that allow the height of the bed to vary are covered if you require this feature to permit transfers to a chair, wheelchair or standing position.
  • A semi-electric bed is covered if you require frequent changes in body position and/or have an immediate need for a change in body position.
  • Heavy-duty/extra-wide beds can be covered if you weigh over 350 pounds.
  • The total electric bed is not covered because it is considered a convenience feature. If you prefer to have the total electric feature, your provider usually can apply the cost of the semi-electric bed toward the monthly rental price of the total electric model. You will need to sign an Advance Beneficiary Notice (ABN)and will be responsible to pay the difference in the retail charges between the two items every month.

Lymphedema Pumps

  • Lymphedema Pumps are covered for treatment of true lymphedema as a result of a:
    • Primary Lymphedema resulting from a congenital abnormality of lymphatic drainage or Milroy's disease, or
    • Secondary lymphedema resulting from the destruction of or damage to formerly functioning lymphatic channels such as:
      • radical surgical procedures with removal of regional groups of lymph nodes (for example, after radical mastectomy),
      • post-radiation fibrosis,
      • spread of malignant tumors to regional lymph nodes with lymphatic obstruction,
      • or other causes
    • Before you can be prescribed a pump, your physician must monitor you during a four-week trial period where other treatment options are tried such as medication, limb elevation and compression garments. If, at the end of the trial, there is little or no improvement, a lymphedema pump can be considered.
    • The doctor must then document an initial treatment with a pump and establish that the treatment can be tolerated.
  • Lymphedema pumps also are covered for the treatment of chronic venus insufficiency (CVI).
    • Before you can be prescribed a pump for this condition, your physician must monitor you during a six month trial period where other treatment options are tried such as medication, limb elevation and compression garments. If at the end of the trial the stasis ulcers are still present, a lymphedema pump can be considered.
    • The doctor must then document an initial treatment with a pump and establish that the treatment can be tolerated, that there is a caregiver available to assist with the treatment in the home, and then the doctor must prescribe the pressures, frequency, and duration of prescribed use.

Medicare-covered drugs (other than Medicare Part D coverage)

  • As of February 2001, all providers of Medicare-covered drugs are required to accept assignment on these items.
  • Traditional Medicare Part B insurance will cover some nebulizer drugs, some infused drugs that require the use of a pump, specific immunosuppressive drugs, select oral anti-cancer medications and most parenteral nutrition.
  • The Medicare Part D plans may provide additional coverage of other oral medications, inhalers and similar drugs.

Mobility Products: Canes, Walkers, Wheelchairs, and Scooters

  • Essentially the new Mobility Assistive Equipment regulations will ensure that Medicare funds are used to pay for:
    • Mobility needs for daily activities within the home
    • The lowest level of equipment required to accomplish these tasks.
    • The most medically appropriate equipment (that meets your needs, not your wants)
  • Medicare requires that your physician and provider evaluate your needs and expected use of the mobility product you will qualify for.
  • They must determine which is the least level of equipment needed to help you be mobile within your home to accomplish daily activities by asking the following questions:
    • Will a cane or crutches allow you to perform these activities in the home?
    • If not, will a walker allow you to accomplish these activities in the home?
    • If not, is there any type of manual wheelchair that will allow you to accomplish these activities in the home?
    • If not, will a scooter allow you to accomplish these activities in the home?
    • If not, will a power chair allow you to accomplish these activities in the home?
  • Keep in mind if you have another higher level product in mind that will allow you to do more beyond the confines of the home setting, you can discuss with your provider the option to upgrade to a higher level or more comfortable product by paying an additional out of pocket fee using the Advance Beneficiary Notice (ABN).
  • A face-to-face examination with your physician to specifically discuss your mobility limitations and need for powered mobility is required prior to the initial setup of a power chair or scooter.
  • Your home must be evaluated to ensure it will accommodate the use of any mobility product.
  • You may also be asked to see a physical therapist or occupational therapist to determine the best fit and equipment selection.

Nebulizers

  • Nebulizer machines, medications and related accessories are usually covered if you have obstructive pulmonary disease, but can also be covered to deliver specific medications if you have HIV, Cystic Fibrosis, brochiectasis, pneumocystosis, complications of organ transplants, or for persistent thick or tenacious pulmonary secretions.
  • You may obtain up to a three month's supply of nebulizer medications and accessories at a time as long as you continue to regularly use the medications through your machine.
  • If at any time you stop using your medications, please notify your provider.

Non-covered items (partial listing):

  • Adult Diapers
  • Bathroom Safety Equipment
  • Hearing Aides
  • Syringes/Needles
  • Van Lifts or Ramps
  • Exercise Equipment
  • Humidifiers/Air Purifiers
  • Raised Toilet Seats
  • Massage Devices
  • Stair Lifts
  • Emergency Communicators
  • Low Vision Aides
  • Grab Bars
  • Elastic Garments

Orthopedic Shoes

  • Orthopedic shoes are covered when it is necessary to attach the shoe(s) to a leg brace.
  • Medicare will only pay for the shoe(s) attached to leg brace(s).
  • Medicare will not pay for matching shoes or for shoes that are needed for purposes other than for diabetes or leg braces.

Ostomy Supplies

  • Ostomy supplies are covered for people with a:
    • colostomy,
    • ileostomy, or
    • urostomy
  • You may obtain up to a three month's supply of wafers, pouches, paste and other necessary items at a time.

Oxygen

  • Oxygen is covered if you have significant hypoxemia in a chronic stable state when:
    • You have a severe lung disease or hypoxemia that might be expected to improve with oxygen therapy, and
    • Your blood gas levels or oxygen saturation levels indicate the need for oxygen therapy, and
    • Your oxygen study was performed by a qualifying physician or sleep lab, and
    • Alternative treatments have been tried or deemed clinically ineffective.
  • Categories/Groups are based on the test results to measure your oxygen:
    • Group I Criteria: mmHG = 55, or saturation = 88%
    • For these results you must return to your physician between 9-12 months after the initial visit to discuss whether your oxygen therapy should continue for lifetime or for a shorter period if the need is expected to end. Typically, you will not have to be retested when you return to your physician for the follow-up visit.
    • Group II Criteria: 56-59 mmHg, or 89% saturation
    • For these results, you must return for another office visit with your physician to discuss your oxygen therapy and you will also have to be retested within 3 months of the first test to continue therapy for lifetime or until the need is expected to end.
    • Group III Criteria: mmHg = 60 or saturation = 90% is considered to be not medically necessary.

Oxygen will be paid as a rental for the first 36 months. After that time, if you still need the equipment, Medicare will no longer make rental payments on the equipment. However, if equipment is still necessary, your provider will continue to provide the equipment to you for an additional 24 months. During this two year service period, Medicare will pay your provider for refilling your oxygen cylinders and for a semi-annual maintenance fee.

After 60 months of service through Medicare you may choose to receive new equipment.

Parenteral and Enteral Therapy

  • Parenteral therapy requires all or part of the gastrointestinal tract to be missing. Nutritional formulas are delivered through a vein.
  • Enteral therapy is covered if you cannot swallow or take food orally. Nutrition must be delivered through a tube directly into the gastrointestinal tract.
  • Medicare will not pay for nutritional formulas that are taken orally.
  • Specialty nutrients/formulations can be covered if you have unique nutrient needs or specific disease conditions which are well documented in your physician's records. In some cases you may have to try standard formulas and document that they are unsuccessful before you can receive the specialty nutrients.

Patient Lifts

  • A lift is covered if transfer between a bed and a chair, wheelchair, or commode requires the assistance of more than one person and, if without the use of a lift, you would be bed confined.
  • An electric lift mechanism is not covered; because it is considered a convenience feature. If you prefer to have the electric mechanism, your provider can usually apply the cost of the manual lift toward the purchase price of the electric model. You will need to sign an Advance Beneficiary Notice (ABN) and would be responsible to pay the difference in the retail charges between the two items on a monthly basis.
  • Patient lifts are a capped rental item, and that means they cannot be purchased outright. You will own the equipment after Medicare makes 13 payments toward the purchase of the equipment.

Seat Lift Mechanisms

  • In order for Medicare to pay for a seat lift mechanism, you must be suffering from severe arthritis of the hip or knee, or have a severe neuromuscular disease. In addition you must be completely incapable of standing up from any chair, but once standing can walk either independently or with the aid of a walker or cane. The physician must believe that the mechanism will improve, slow down or stop the deterioration of your condition.
  • Transferring directly into a wheelchair will prevent Medicare from paying for the device.
  • Medicare will only pay for the lift mechanism portion. The chair portion of the package is not covered, and you will be responsible for paying the full amount for the furniture component of the chair.
  • Your provider cannot deliver this product to you without a written order or certificate of medical necessity from your doctor, nor can they get the documentation at a later date because if they do, Medicare can never make payment for those products to you or your provider. So please be patient with your provider while they collect the required documentation from your physician.

Support Surfaces

  • Group 1 products are designed to be placed on top of a standard hospital bed or home mattresses. They can utilize gel, foam, water or air, and are covered if you are:
    • Completely immobile OR
    • Have limited mobility or any stage ulcer on the trunk or pelvis (and one of the following):
      • impaired nutritional status
      • fecal or urinary incontinence
      • altered sensory perception
      • compromised circulatory status
  • Group 2 products take many forms, but are typically powered pressure reducing mattresses or overlays. They are covered if you have one of three conditions:
    • Multiple stage II ulcers on the pelvis or trunk while on a comprehensive treatment program for at least a month using a Group 1 product, and at the close of that month, the ulcers worsened or remained the same. (Monthly follow-up is required by a clinician to ensure that the treatment program is modified and followed. This product is only covered while ulcers are still present.) OR
    • Large or multiple Stage III or IV ulcers on the trunk or pelvis (Monthly follow-up is required by a clinician to ensure that the treatment program is modified and followed. This product is only covered while ulcers are still present.) OR
    • A recent myocutaneous flap or skin graft for an ulcer on the trunk or pelvis within the last 60 days where you were immediately placed on Group 2 or 3 support surface prior to discharge from the hospital and you have been discharged within the last 30 days.
  • A physician or healthcare professional must make monthly assessments as to whether continued use of the equipment is required. Sometimes your physician may order a home healthcare nurse to come visit you to make these assessments.
  • Group 3 products are air-fluidized beds and are only covered if you meet ALL of the following conditions:
    • A stage III or stage IV pressure ulcer, and
    • Are bedridden or chair bound as the result of limited mobility, and
    • In the absence of an air-fluidized bed would require institutionalization, and
    • An alternate course of conservative treatment has been tried for at least one month without improvement of the wound, and
    • All other alternative equipment has been considered and ruled out.
  • A physician or healthcare professional must assess and evaluate you after completion of a course of conservative therapy within one month prior to ordering the Group 3 support surface.
  • A trained adult caregiver must be available to assist you. Medicare does not cover the cost of hiring a caregiver, or for structural modifications to your home to accommodate this equipment.
  • Your provider cannot deliver these products to you without a written order from your doctor, nor can they get the documentation at a later date because if they do, Medicare can never make payment for those products to you or your provider. So please be patient with your provider while they collect the required documentation from your physician.

TENS Units

  • TENS units are covered for the treatment of chronic intractable pain that has been present for at least three months or more, and in some cases for acute post-operative pain.
  • Not all types of pain can be treated with a TENS unit. TENS units have been proven ineffective in treating headaches, visceral abdominal pain, pelvic pain, and TMJ pain, and therefore Medicare will not pay for the device when used to treat these conditions.
  • For chronic pain sufferers that have had persistent pain for three or more months in duration, Medicare will pay for a one or two month trial rental to determine if this device will help or alleviate the chronic pain. You must return to your physician exactly 30-60 days after initial evaluation to discuss how the therapy is working and to authorize the purchase of this equipment.
  • For acute, post-operative pain sufferers, Medicare will consider rental payment for a maximum of 30 days. Any duration longer than that will require individual consideration.
  • Your provider cannot deliver this product to you without a written order or certificate of medical necessity from your doctor, nor can they get the documentation at a later date because if they do, Medicare can never make payment for those products to you or your provider. So please be patient with your provider while they collect the required documentation from your physician.

Therapeutic Shoes

  • Special therapeutic shoes, inserts and modifications can be covered for diabetic patients with the following foot conditions:
    • previous amputation of a foot or partial foot
    • history of foot ulceration
    • peripheral neuropathy with callus formation
    • foot deformity
    • poor circulation in either foot
  • You must have an office visit with your physician within six months of receiving new shoes to discuss and document your diabetes management and why you need these special shoes. This office visit must be repeated each time you wish to obtain replacement shoes.
  • When providing you with shoes, your provider must perform an in-person evaluation of your foot/feet, and must verify that your shoes fit properly.
  • Your provider cannot deliver this product to you without a written order or certificate of medical necessity from your doctor, nor can they get the documentation at a later date because if they do, Medicare can never make payment for those products to you or your provider. So please be patient with your provider while they collect the required documentation from your physician.

Urological Supplies

  • Urinary catheters and external urinary collection devices are covered to drain or collect urine if you have permanent urinary incontinence or permanent urinary retention. Permanent urinary retention is defined as retention that is not expected to be medically or surgically corrected within 3 months.
  • A maximum of six catheters may be used per day (up to 200 per month), unless it is determined that a higher number is medically necessary by your physician, and these unique circumstances are specifically documented in your medical records.
  • When at home, you may receive up to a 3-month supply at one time.

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III. Medicare Supplier Standards

Below is a summary of the standards Medicare requires of home medical equipment providers. Our company meets or exceeds all of these standards.

  1. A supplier must be in compliance with all applicable Federal and State licensure and regulatory requirements and cannot contract with an individual or entity to provide licensed services.
  2. A supplier must provide complete and accurate information on the DMEPOS supplier application. Any changes to this information must be reported to the National Supplier Clearinghouse within 30 days.
  3. An authorized individual (one whose signature is binding) must sign the application for billing privileges.
  4. A supplier must fill orders from its own inventory, or must contract with other companies for the purchase of items necessary to fill the order. A supplier may not contract with any entity that is currently excluded from the Medicare program, any State health care programs, or from any other Federal procurement or non-procurement programs.
  5. A supplier must advise beneficiaries that they may rent or purchase inexpensive or routinely purchased durable medical equipment, and of the purchase option for capped rental equipment.
  6. A supplier must notify beneficiaries of warranty coverage and honor all warranties under applicable State law, and repair or replace free of charge Medicare covered items that are under warranty.
  7. A supplier must maintain a physical facility on an appropriate site. This standard requires that the location is accessible to the public and staffed during posted hours of business. The location must be at least 200 square feet and contain space for storing records.
  8. A supplier must permit CMS, or its agents to conduct on-site inspections to ascertain the supplier's compliance with these standards. The supplier location must be accessible to beneficiaries during reasonable business hours, and must maintain a visible sign and posted hours of operation.
  9. A supplier must maintain a primary business telephone listed under the name of the business in a local directory or a toll free number available through directory assistance. The exclusive use of a beeper, answering machine, answering service or cell phone during posted business hours is prohibited.
  10. A supplier must have comprehensive liability insurance in the amount of at least $300,000 that covers both the supplier's place of business and all customers and employees of the supplier. If the supplier manufactures its own items, this insurance must also cover product liability and completed operations.
  11. A supplier must agree not to initiate telephone contact with beneficiaries, with a few exceptions allowed. This standard prohibits suppliers from contacting a Medicare beneficiary based on a physician's oral order unless an exception applies.
  12. A supplier is responsible for delivery and must instruct beneficiaries on use of Medicare covered items, and maintain proof of delivery.
  13. A supplier must answer questions and respond to complaints of beneficiaries, and maintain documentation of such contacts.
  14. A supplier must maintain and replace at no charge or repair directly, or through a service contract with another company, Medicare-covered items it has rented to beneficiaries.
  15. A supplier must accept returns of substandard (less than full quality for the particular item) or unsuitable items (inappropriate for the beneficiary at the time it was fitted and rented or sold) from beneficiaries.
  16. A supplier must disclose these supplier standards to each beneficiary to whom it supplies a Medicare-covered item.
  17. A supplier must disclose to the government any person having ownership, financial, or control interest in the supplier.
  18. A supplier must not convey or reassign a supplier number; i.e., the supplier may not sell or allow another entity to use its Medicare billing number.
  19. A supplier must have a complaint resolution protocol established to address beneficiary complaints that relate to these standards. A record of these complaints must be maintained at the physical facility.
  20. Complaint records must include: the name, address, telephone number and health insurance claim number of the beneficiary, a summary of the complaint, and any actions taken to resolve it.
  21. A supplier must agree to furnish CMS any information required by the Medicare statute and implementing regulations.
  22. All suppliers must be accredited by a CMS-approved accreditation organization in order to receive and retain a supplier billing number. The accreditation must indicate the specific products and services, for which the supplier is accredited in order for the supplier to receive payment of those specific products and services (except for certain exempt pharmaceuticals). Implementation Date - October 1, 2009
  23. All suppliers must notify their accreditation organization when a new DMEPOS location is opened.
  24. All supplier locations, whether owned or subcontracted, must meet the DMEPOS quality standards and be separately accredited in order to bill Medicare.
  25. All suppliers must disclose upon enrollment all products and services, including the addition of new product lines for which they are seeking accreditation.
  26. Must meet the surety bond requirements specified in 42 C.F.R. 424.57(c). Implementation Date - May 4, 2009
  27. A supplier must obtain oxygen from a state- licensed oxygen supplier.
  28. A supplier must maintain ordering and referring documentation consistent with provisions found in 42 C.F.R. 424.516(f).
  29. DMEPOS suppliers are prohibited from sharing a practice location with certain other Medicare providers and suppliers.
  30. DMEPOS suppliers must remain open to the public for a minimum of 30 hours per week with certain exceptions.

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The Internet is a great source of information for you to use in managing your healthcare or the healthcare of a loved one. It can also be good way to locate the support resources you need as a patient or caregiver. Below is a list of links which we hope will help you find the information and support you need. Please call our office directly if we can be of any assistance to you. When in need of outside help, a local information/referral service can be very useful. Even if they don't have the specific information you're looking for they most likely will know where you can get it. The yellow pages of your phone book should have a guide to local service agencies listed in the Human Services section. If you're unable to find a Human Service guide, or the specific service you're looking for, call the local service of a national service organization and explain your problem. They should be able to direct you to the right place.

Healthcare Resource Sites:

Health Conditions and Organizations:

Government and Social Services:


Health Issues - below are some of the most common health issues. Please feel free to read the information we have collected. Some of this information includes risks, tips, explanations, and prevention tips for patients and caregivers.
Alzheimers Diabetes Osteoporosis
Asthma Epilepsy/Sezures Parkinson's Disease
Breast Cancer Hepatitis C Sleep Apnea
CHF Multiple Sclerosis Urinary Incontinence
COPD Muscular Dystrophy Wound Care
Cystic Fibrosis Obesity  
     

 

Help for Patients and Caregivers : Parkinson's Disease

What is Parkinson's Disease?
Common Symptoms
What Causes Parkinson's Disease?
Medications
Surgical Treatments
Role of the Patient
Caregiver Information
Additional Information


What is Parkinson's Disease?
Parkinson's disease belongs to a group of conditions called movement disorders. It is both chronic, meaning it persists over a long period of time, and progressive, meaning its symptoms grow worse over time.

Parkinson's disease occurs when a group of cells, in an area of the brain called the substantia nigra, that produce a chemical called dopamine begin to malfunction and eventually die. Dopamine is a neurotransmitter, or chemical messenger, that transports signals to the parts of the brain that control movement initiation and coordination. When Parkinson's disease occurs, for unexplained reasons, these cells begin to die at a faster rate and the amount of dopamine produced in the brain decreases. The four primary symptoms are:

  • tremor of the hands, arms, legs, jaw, and face;
  • rigidity or stiffness of the limbs and trunk;
  • bradykinesia or slowness of movement, and
  • postural instability or impaired balance and coordination.

If you have a question about Parkinson's disease, why not submit it to our medical experts and receive an email reply within 10 working days. To reach 'Ask the Expert', just click here. At this site you can also review our archive of hundreds of answers to questions about Parkinson's listed by category in our "Expert Resource Center".

Visit our "Publications & Videos" section to review a list of print and audio patient materials from the Parkinson's Disease Foundation that are available free of charge, or sign up to receive regular news and updates by mail and email. Click here to sign up.

As many as one million Americans suffer from Parkinson's disease. While approximately 15% of Parkinson's patients are diagnosed before the age of 40, incidence increases with age. The cause is unknown, and although there is presently no cure, there are many treatment options such as medication and surgery to manage the symptoms.
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Common Symptoms?
The symptoms vary from patient to patient and not every one is affected by all of them. In some people, the disease progresses quickly; in others it does not. The following are the most common primary symptoms of Parkinson's disease.

Tremor: In the early stages of the disease, about 70% of people experience a slight tremor in the hand or foot on one side of the body, or less commonly in the jaw or face. It appears as a 'beating' or oscillating movement and is regular (4-6 beats per second). Because tremor usually appears when the muscles are relaxed, it is called "resting tremor." This means that the affected body part trembles when it is at rest and not doing work and often subsides with action. The tremor often spreads to the other side of the body as the disease progresses, but remains most apparent on the original side of occurrence.

Rigidity: Rigidity or increased muscle tone means stiffness or inflexibility of the muscles. Normally muscles contract when they move, and then relax when they are at rest. In rigidity, the muscle tone of an affected limb is stiff. Rigidity can result in a decreased range of motion. For example a patient may not swing his or her arms when walking. Rigidity can also cause pain and cramps at the muscle site.

Bradykinesia: Bradykinesia is a slowing of voluntary movement. In addition to slow movements, a person with bradykinesia will likely also have incompleteness of movement, difficulty in initiating movements, and arrests of ongoing movement. Patients may begin to walk with short, shuffling steps (festination), which, combined with other symptoms such as loss of balance, increases the incidence of falls. They may also experience difficulty making turns or abrupt movements. They may go through periods of "freezing," which is when the patient is stuck and finds it difficult to stop or start walking. Bradykinesia and rigidity can occur in the facial muscles, causing a "mask-like" expression with little or no movement of the face. The slowness and incompleteness of movement can also affect speaking and swallowing.

There are many secondary symptoms of Parkinson's disease. These include stooped posture, a tendency to lean forward or backward, and speech problems, such as softness of voice or slurred speech caused by lack of muscle control. Non-motor symptoms also impact the life of a person with Parkinson's. A survey published in October 2003, "The Impact of Parkinson's Disease on Quality of Life" revealed that two of the top three most disabling symptoms for people with Parkinson's are non-motor symptoms, including loss of energy and pain. To review the results of this survey go to: http://www.amarinpharma.com/.

The following is a list of secondary symptoms of Parkinson's disease:

  • Speech changes
  • Loss of facial expression
  • Micrographia (small, cramped handwriting)
  • Difficulty swallowing
  • Drooling
  • Pain
  • Dementia or confusion
  • Sleep disturbances
  • Constipation
  • Skin problems
  • Depression
  • Fear or anxiety
  • Memory difficulties and slowed thinking
  • Sexual dysfunction
  • Urinary problems
  • Fatigue and aching
  • Loss of energy
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What Causes Parkinson's Disease?
Why an individual develops Parkinson's disease remains undetermined. The causes likely include both genetic and environmental factors. A variety of mechanisms that are believed to cause accelerated cell death have also been suggested, including oxidative stress, excitotoxicity and mitochondrial dysfunction. These are described below.

  • Genetics    About 15-25% of Parkinson's patients report having a relative with Parkinson's. Researchers have found a defective gene in some rare families, with a high incidence of Parkinson's disease. These rare cases have an inherited form of Parkinson's disease. Scientists have discovered several "Parkinson's genes" and there is conclusive evidence that genetics play a role in at least some patients. There appears to be a 2-3 fold increased risk of PD in first degree relatives compared to matched control populations. However, the majority of cases of PD still appear to be sporadic.
  • Environmental Factors    Some scientists have suggested that Parkinson's disease may occur when a toxin selectively destroys dopaminergic neurons. Scientists have known for a number of years of several toxins that can cause Parkinson's-like symptoms, such as MPTP. Several studies have suggested a link between rural living, herbicide use and exposure to pesticides as possible factors that may contribute to a person's developing Parkinson's. Some PWP's recall a time when they were exposed to chemicals, and believe this exposure may be a possible cause. Scientists are continuing to pursue these clues to establish more concrete linkages.

While the debate concerning environmental factors and genetics as causative factors in PD continues, there has been extensive investigation of the mechanisms involved in the cell death process. A number of cell death concepts have been put forward including, oxidative stress, mitochondrial dysfunction and excitotoxicity.

  • Oxidative damage    This theory suggests that free radicals - unstable molecules whose toxic effects are believed to be caused by oxidation - may contribute to cell death, thereby leading to Parkinson's disease. Oxidation is thought to cause damage to tissues, including neurons. In addition, antioxidant defenses appear to be markedly reduced in PD brains. In particular, reduced levels of glutathione (an acid which plays a role in the detoxification of harmful compounds) have been discovered. The cause of the deficiency and the potential role that antioxidants like glutathione play in the development of PD remain unresolved.
  • Mitochondrial dysfunction    The mitochondria are small bodies within cells that produce energy. They can be described as the 'power-house' of the cell. Scientific findings indicate a reduction in the function of mitochondria and this may play a role in PD.
  • Excitotoxicity    occurs when selected neurotransmitters in the brain get out of balance leading to cell death. This mechanism has been documented in Parkinson's and scientists believe that glutamate excitotoxicity is the main culprit within this mechanism. Finding a way to correct this imbalance may prevent be neuroprotective.
Most experts in the field share the opinion that Parkinson's is caused by a combination of genetic and environmental factors, and other contributing mechanisms of cell death. For regular updates on scientific discoveries about Parkinson's disease, see the PDF "Science Bulletin" in our News section of the PDF website by clicking here. Or subscribe to the "PDF News" our quarterly newsletter. To subscribe, click here.
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Medications for Parkinson's Disease
There are several symptomatic treatments for people with Parkinson's including medication, surgery, and physical therapy. The degree of success of each treatment varies among individuals, as does the length of time the treatment option remains effective.

Levodopa is a dopamine precursor, a substance that is converted into dopamine by an enzyme in the brain. The use of levodopa was a breakthrough in the treatment of PD. Unfortunately, patients experienced debilitating side effects, including severe nausea and vomiting. With increased dosing and prolonged use of levodopa, patients experienced other side effects including dyskinesias (spontaneous, involuntary movements) and "on-off" periods when the medication will suddenly start or stop working.

Check with a doctor before taking any of the following to avoid possible interactions: antacids, anti-seizure drugs, anti-hypertensives, anti-depressants and high protein food.

Combining Levodopa with Carbidopa (Sinemet) represented a significant improvement in the treatment of Parkinson's disease. The addition of carbidopa prevents levodopa from being metabolized in the gut, liver and other tissues, and allows more of it to get to the brain. Therefore, a smaller dose of levodopa is needed to treat symptoms. In addition, the severe nausea and vomiting often associated with levodopa treatment was greatly reduced.

Consult a doctor before taking any medications to avoid possible interactions. In particular, antacids, anti-seizure drugs, anti-hypertensives, anti-depressants and high protein food may adversely affect the function of Levodopa/carbidopa.

Stalevo (carbidopa, levodopa and entacapone) is a new (September 2003) combination tablet for patients who experience signs and symptoms of end-of-dose "wearing-off." The tablet combines carbidopa/levodopa (the most widely used agent for PD), with entacapone. While carbidopa reduces the side effects of levodopa, entacapone extends the time levodopa is active in the brain (up to 10 percent longer). The same drugs that interact with carbidopa/levodopa and entacapone interact with Stalevo.

Symmetrel (amantadine hydrochloride) is thought to work in PD because it has several actions. It activates both the release of dopamine from storage sites and possibly blocks the re-uptake of dopamine into nerve terminals. It also has a glutamate receptor blocking activity. Its dopaminergic actions result in its usefulness in reducing dyskinesia induced by levodopa. It is thus called an indirect-acting dopamine agonist, and is widely used as an early monotherapy (treatment of a condition by means of a single drug), with the more powerful Sinemet added when needed. Unfortunately, its benefit in more advanced PD is often short-lived, with patients reporting a fall-off effect.d

Symmetrel may interact with Cogentin (benztropine), Disipal (orphenadrine), Sinemet (levodopa), Artane (trihexyphenidyl), amphetamines and alcohol.

Anticholinergics (trihexyphenidyl, benztropine mesylate, procyclidine, etc.) do not act directly on the dopaminergic system. Instead they act to decrease the activity of another neurotransmitter, acetylcholine. There is a complex interaction between levels of acetylcholine in the brain and levels of dopamine. Many clinicians find that if an agonist or levodopa does not relieve tremor, then the addition of an anticholinergic drug is often effective. Adverse effects include blurred vision, dry mouth and urinary retention. These drugs may be contraindicated in older patients since they can cause confusion and hallucination.d

Check with a doctor before using anticholinergics with anti-histamines, Haldol, Thorazine, Symmetrel, Clozaril and alcohol.

Selegiline or deprenyl (Eldepryl) has been shown to delay the need for Sinemet when prescribed in the earliest stage of PD, and has also been approved for use in later stages to boost the effects of Sinemet. Eldepryl may interact with anti-depressants, narcotic pain killers and decongestants. Check with a doctor before taking any new medications.

Dopamine agonists are drugs that activate dopamine receptors directly, and can be taken alone or in combination with Sinemet. Agonists available in the United States include bromocriptine (Parlodel), pergolide (Permax), pramipexole (Mirapex) and ropinirole (Requip).

Consult a doctor before taking any of the following to avoid possible interactions: alcohol, anti-psychotics, medications that lower blood pressure, Navane (thiothixene), Taractan (chlorprothixene), Haldol (haloperidol), Reglan (metoclopramide), phenothiazines, thiozanthenes, cimetidine, phenothiazines, butyrophenones, Cipro and benzodiazepines.

COMT inhibitors such as tolcapone (Tasmar) and entacapone (Comtan) represent a different class of Parkinson's medications. These drugs must be taken with levodopa. They prolong the duration of symptom relief by blocking the action of an enzyme which breaks down levodopa.

*** Side Effects from Medications - Like the symptoms of PD themselves, the side effects caused by Parkinson's medications vary from patient to patient. They may include dry mouth, nausea, dizziness, confusion, hallucinations, drowsiness, insomnia, and other unwelcome symptoms. Some patients experience no side effects from a drug, while others may have to discontinue its use because of them.

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Surgical Treatments
Surgery is an option for patients to explore after they have had experience with medications and are no longer satisfied with the results. A patient should discuss surgery thoroughly with his or her neurologist before making any decision.

Two older, and somewhat outdated, lesioning procedures that provide relief from Parkinson's symptoms are pallidotomy and thalamotomy. Pallidotomy can alleviate rigidity and bradykinesia symptoms, and thalamotomy helps to control tremors. Doctors rarely perform either procedure because both permanently destroy parts of the brain and have serious side effects. The damage could make it impossible to perform surgeries that may become available in the future, such as brain tissue transplants.

Deep brain stimulation (DBS) , a safer and more effective surgery, has replaced these methods. It is a preferred surgical option because it has the same, if not better results than pallidotomy and thalamotomy. DBS also leaves open the possibility of other therapies, should they become available in the future. As with any surgical procedure, there are risks and side effects. The main benefit of DBS surgery is to reduce motor fluctuations i.e. the ups and downs caused by a decreasing effectiveness of Sinemet.

The electrode is usually placed on one side of the brain. The DBS electrode implanted in the left side of the brain will control the symptoms on the right side of the body and vice versa. In some cases, patients will need to have stimulators on both sides of the brain.

During surgery, a device is implanted to provide an electrical impulse to a part of the brain involved in motor function. This is often the subthalamic nucleus, in a deep part of the brain called the thalamus. During the procedure, electrodes are inserted into the targeted brain region using MRI and neurophysiological mapping to ensure that they are implanted in the right place. The electrodes are connected to wires that lead to an impulse generator or IPG (similar to a pacemaker) that is placed under the collarbone and beneath the skin. Patients have a controller, which allows them to verify whether the DBS is 'on' or 'off'. They can use this device to check the battery and to turn the device 'on' or 'off'. An IPG battery lasts for about 3 to 5 years and is relatively easy to replace under local anesthesia.

Patients considering one or another surgical procedure should discuss the options first with their movement disorder specialists and then with their families and/or caregivers.

For more information on DBS, order from PDF our comprehensive booklet "Surgery for Parkinson's Disease", written by our medical advisor Dr. Blair Ford. To order your free copy, send a request by email to This email address is being protected from spambots. You need JavaScript enabled to view it. . Or you can get information on the web by visiting these sites:

www.medtronic.com/UK/patients/neuro/brain_stimulation.html
www.clevelandclinic.org/neuroscience/treat/movement/dbs.htm
www.rewiredforlife.org
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Role of the Patient
Treating Parkinson's disease is not exclusively the doctor's job; there is much the individual can do to stay as well as possible for as long as possible. Regular exercise, being part of a support group, maintaining a healthy diet or taking part in a clinical trial are just some of the things you might consider.

Exercise: For people with Parkinson's, regular exercise and/or physical therapy are essential for maintaining and improving mobility, flexibility, balance, and a range of motion, and for warding off many of the secondary symptoms mentioned above. Exercise is as important as medication for the management of PD.

Support groups: For many people, these groups play an important role in the emotional well-being of patients and families. They provide a caring environment for asking questions about Parkinson's, for laughing and crying and sharing stories and getting advice from other sufferers, and for forging friendships with people who understand each other's problems.

Diet: There is no specific diet to prevent or slow Parkinson's but there are several suggestions to help manage the disease. A vegetable-rich diet may aid digestion and prevent constipation. Parkinson's patients should also take a balanced approach to protein intake because protein inhibits the absorption of levodopa in the gut. Avoiding high protein meals when taking levodopa helps prevent this potential problem. However, a patient should not make dietary changes without discussing this first with their doctor. Parkinson's disease nutrition author, Kathrynne Holden, offers several books, including "Eat Well, Stay Well" and "Cook Well, Stay Well" that provide beneficial eating and cooking tips. Copies can be ordered from Five Star Living, on (877) 565-2665 or at www.nutritionucanlivewith.com.

A Healthy Patient/Doctor Relationship: A neurologist can most effectively help a patient manage his or her Parkinson's if the neurologist and the patient have a good working relationship. Doctors need the patient to be honest, forthright, and inquisitive in order to give the best medical attention possible. Patients should also require that a doctor treat them in the same honest, open manner, engaging them in dialogue about the patient's experiences. Doctors can provide a wealth of information and suggestions for improving quality of life.

Physical, Speech and/or Occupational Therapy: These therapies can help Parkinson's patients control their symptoms and make daily life easier. Physical therapy may increase muscle strength and flexibility and decrease the incidence of falls. Speech therapy is available to increase voice volume and assist with word pronunciation. The Lee Silverman technique is a special speech therapy that can be very beneficial to people with Parkinson's - for further information see www.lsvt.org.

Occupational therapy affords patients alternative methods of doing tasks that they can no longer perform with ease. These options may give patients a stronger sense of control when living with Parkinson's disease, which seems to take control from them. The patient should ask a physician for recommendations if he or she does not provide them. These therapies may or may not be covered by insurance.

Clinical Trials: Getting involved in a clinical trial may be a way for a patient to feel empowered and help researchers understand more about Parkinson's disease in order to improve treatment options for this disorder. Increased clinical trial participation will result in a better understanding of the disease and will also help treatments that are in the research and developmental phases reach patients more quickly. A patient should understand what the trial entails and be educated about the patient's responsibilities and obligations. To find more information on the patient's role in clinical trials, visit www.ninds.nih.gov/parkinsonsweb/clinical_trials_info.htm.

For information on Parkinson's disease clinical trials, visit:
www.clinicaltrials.gov
www.centerwatch.com

To participate in an important survey about clinical trials, please click here.

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PD Caregiver Well-Being

What can friends and family of a person with Parkinson's do?

  • Stay educated about the person's condition and abilities and adapt accordingly.
  • Support environment and lifestyle changes that often need to be made by a person with Parkinson's disease.
  • Encourage medical consultation with a physician.
  • Request a referral for occupational therapy from a family physician to promote maximal capabilities in self-care, household tasks, and valued life activities.

Physical Health
Caregiving can be physically and emotionally draining, especially when caregiving duties are demanding and constant. PD caregivers provided an average of 96 hours of care per week to their care recipients. The vast majority (73%) reported significant health problems. The most prevalent health problems reported involved arthritis (27%), self-reported depression (26%), high blood pressure (23%), and heart trouble (15%). One-third of PD caregivers reported their overall health as fair (28%) or poor (5%), while nearly half of caregivers (46%) stated their health troubles were standing in the way of assuming an expanded caregiving role. Forty-eight percent stated their current health status was worse at the time of assessment than it had been five years earlier. One in five caregivers (20%) had at least three medical exams in the last six months.

Mental Health
PD caregivers experienced high levels of depression as illustrated by an average score of 19.88 on the CES-D3. In fact, 60% of this group scored 16 or higher on the CES-D questionnaire (26% of PD caregivers self-reported depression was a current health problem). Among PD caregivers, women scored significantly higher than men (t = -2.72, p< .01). Interestingly, depression scores did not differ significantly by ethnicity, but did differ by type of relationship between the caregiver and care recipient, albeit not significantly. Mothers and daughters of care recipients scored the highest of all relationship groups on the CES-D (34.5 and 22.0, respectively). PD caregivers were significantly more likely to demonstrate higher depression scores if their care recipients needed supervision with performing personal care tasks compared with PD.

3 Score of 16 or higher on the CES-D demonstrates evidence of clinically significant depressive symptoms. caregivers reporting other functional needs. Additionally, PD caregivers who reported their loved ones were either forgetting what day it was or were being argumentative or irritable, were significantly more likely to score high on the CES-D respectively than PD caregivers whose care recipient did not report these behaviors.

PD Caregiver Strain
More than one-third (38%) of PD caregivers reported the informal help and social support they were receiving was far less than they needed. When asked how burdened they felt in caring for their relatives, 28% of PD caregivers reported feeling “quite a bit” burdened while 16% reported feeling “extremely” burdened. Another 31% of PD caregivers reported feeling “moderately” burdened.

Perception of role
Generally, PD caregivers reported feeling confident in their caregiving role, as demonstrated by an average competency score of 21.4 out of a possible 27. A relatively small percent of caregivers responded “not at all” when asked if they know where and how to request help from others (12%). A majority of caregivers felt that they “somewhat” or “very much” received the emotional support they needed (81%) and were able to develop ways to manage the stresses of caregiving (83%).

Identified PD Caregiver Problems at Assessment
CRC Family Consultants reported the most common problems for PD caregivers at assessment were the need for respite (85%), emotional support (83%), and behavior management (32%). Figure 5 presents the current problems of PD caregivers upon completion of an assessment.

Services Planned for PD Caregivers

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American Parkinson Disease Association
1250 Hylan Blvd.
Suite 4B
Staten Island, NY 10305-1946
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http://www.apdaparkinson.org
Tel: 718-981-8001
800-223-2732
Calif: 800-908-2732
Fax: 718-981-4399

National Parkinson Foundation
1501 N.W. 9th Avenue
Bob Hope Research Center
Miami, FL  33136-1494
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http://www.parkinson.org
Tel: 305-243-6666
800-327-4545
Fla: 800-433-7022
Fax: 305-243-5595

Parkinson Alliance
P.O. Box 308
Kingston, NJ 08528-0308
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http://www.parkinsonalliance.net
Tel: 609-688-0870
800-579-8440
Fax: 609-688-0875

Michael J. Fox Foundation for Parkinson's Research
Grand Central Station
P.O. Box 4777
New York, NY 10163
http://www.michaeljfox.org
Tel: 212-509-0995

Parkinson's Action Network (PAN)
1000 Vermont Ave. N.W.
Suite 900
Washington, DC  20005
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http://www.parkinsonsaction.org
Tel: 800-850-4726 202-842-4101
Calif: 707-544-1994
Fax: 202-842-4105

Parkinson's Disease Foundation (PDF)
710 West 168th Street
New York, NY 10032-9982
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http://www.pdf.org
Tel: 212-923-4700
800-457-6676
Fax: 212-923-4778

Parkinson's Institute
1170 Morse Avenue
Sunnyvale, CA 94089-1605
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http://www.parkinsonsinstitute.org
Tel: 408-734-2800
800-786-2958
Fax: 408-734-8522

Parkinson's Resource Organization
74-090 El Paseo
Suite 102
Palm Desert, CA 92260-4135
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http://www.parkinsonsresource.org
Tel: 760-773-5628
310-476-7030
877-775-4111
Fax: 760-773-9803

Worldwide Education & Awareness for Movement Disorders (WE MOVE)
204 West 84th Street
New York, NY 10024
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http://www.wemove.org
Tel: 800-437-MOV2 (6682)
212-875-8312
Fax: 212-875-8389

Bachmann-Strauss Dystonia & Parkinson Foundation
Mt. Sinai Medical Center One Gustave L. Levy Place
P.O. Box 1490
New York, NY 10029
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http://www.dystonia-parkinsons.org
Tel: 212-241-5614
Fax: 212-987-0662

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CAREGIVER TIPS & INFORMATION:
10 Tips for Family Caregivers
Questions to Ask Your Healthcare Provider
How to Communicate with an Insurance Provider
Find a Doctor
Information on Seating & Mobility
Tips for Family Caregivers from Doctors
Care Management Techniques You Can Use
Compare Home Health Agencies in Your Area
Additional Resources

 


10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don’t delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
5. There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
6.Trust your instincts. Most of the time they’ll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
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Tips for Family Caregivers from Doctors

  • Write questions down so you won’t forget them
  • Be clear about what you want to say to the doctor. Try not to ramble.
  • If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
  • Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
  • Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
  • Recognize that not all questions have answers—especially those beginning with “why.”
  • Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
  • Appreciate what the doctor is doing to help and say thank you from time to time.
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Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is “yes,” you’re not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.

What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:

  • Gathering information from healthcare providers;
  • An assessment of your care recipient and the home environment;
  • Research into available public and/or private services and resources to meet your loved one’s needs; and
  • Ongoing communication between all parties to keep information up to date and services appropriate and effective.

Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one’s health and safety.

Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you’ll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control — a goal well worth working toward.

Educate yourself on the nature of the disease or disability with which you’re dealing. Reliable information is available from the health agency that deals with your loved one’s condition and the National Institutes of Health. When using the Internet, stick with wellknown medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.

Write down your observations of the present situation including:
  • Your loved one’s ability to function independently, both physically and mentally.
  • The availability of family and/or friends to form a support network to share the care.
  • The physical environment: Is it accessible or can it be adapted at reasonable cost?
  • Your other responsibilities — at work, at home, and in the community.
  • Your own health and physical abilities.
  • Your financial resources, available insurance, and existence of healthcare or end-of-life documents.

This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you’ve learned along the way.

Hold a family conference. At least everyone in the immediate family should be told what’s going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.

Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one’s care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.

Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you’ll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn’t family caregivers?

Start advance planning for difficult decisions that may lie ahead. It’s never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.

Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you’ll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.

Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.

Approach some of your hardest caregiving duties like a professional. It’s extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.

©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650

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Seating & Mobility - As a caregiver, you need to be very understanding to the individuals needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. Getting them involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manor. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.

How do you care for your mobility device?

The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.

When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
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Additional Resources

It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs such office on disabilities, elder affairs, or material and child health.

Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.

Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.

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Respiratory Equipment & Products:

Wheelchairs and Components:

 

Health Issues:

Mobility Products:

Other Home Medical Equipment:


Respiratory Equipment & Products

Bi-Level - Bi-Level system makes breathing easier and more natural for adult patients with Obstructive Sleep Apnea (OSA) who are having difficulty complying with continuous positive airway pressure therapy.

Continuous Positive Airway Pressure (CPAP) - One of the most common sleep disorders is sleep apnea - a disorder that causes a person's airway to close several times during one night's sleep. For those with sleep apnea, relief usually comes with continuous positive airway pressure (CPAP). Continuous Positive Airway Pressure (CPAP) devices deliver a prescribed level of positive pressure non-invasively to the upper airway for the treatment of sleep apnea. Extremely easy to use, CPAPs come with different features such as ramping to allow comfortable adjustment to the pressure; software to capture specific usage and breathing events; and automated altitude adjustment. Accessories, such as nasal interface applications and humidification devices are provided to afford maximum comfort to ensure patient compliance.

Liquid oxygen systems - consist of a large main tank and one or two portable units. The portable units are used as needed for travel outside of the home. When they are empty, they can be refilled from the large tank. Portable units can be carried with a shoulder strap or cart. Liquid oxygen will evaporate if not used frequently. Therefore the portable units should be filled just prior to use.

Cylinders - are available in various sizes. Carrying cases or carts are used for the different size tanks.

M2 - Weighs less than 2 pounds and only 7.9 inches in length, this extremely lightweight, compact medical oxygen cylinder is the perfect solution for anyone who needs a convenient, easily transportable medical oxygen supply for a short amount of time. This cylinder is the smallest aluminum oxygen cylinder in the world yet can supply up to 2 hours of oxygen.
M4 - medical oxygen cylinder is a great solution for anyone who needs a convenient, easily transportable medical oxygen supply for a short amount of time. This cylinder weighs under 3 pounds and is only 12 inches in length. This cylinder can supply up to 7 hours of oxygen.
M6 - extremely popular medical oxygen cylinder is the perfect balance between portability and oxygen supply duration. The M6 cylinder is less than 15 inches in length and weighs only 3 pounds and can supply up to 10 hours of oxygen.
ML6 - Similar to the M6 cylinder, the ML6 is a great balance between portability and oxygen supply duration. This cylinder weighs under 4 pounds and is shorter and wider than the M6 cylinder. This cylinder can provide up to 10 hours of oxygen.
M9 - a popular cylinder is a great balance between portability and oxygen supply duration. The M9 is less than 16 inches in length and weighs only 4.5 pounds yet can supply up to 14 hours of oxygen.

Portable E Tanks - Portable smaller units called E tanks are used for transport. A key is required to turn the tank on and off. The portable tanks must be replaced when empty. Therefore, the family must plan ahead for trips outside of the home. Portable E tanks may be used for backup in case of power failure.

Helios Portable Oxygen Systems and Reservoirs - small, lightweight, and long-lasting, encourages an active lifestyle for long-term oxygen therapy patients. No tubes, heavy canisters or batteries are required. The system is also extremely economical. Its pneumatic oxygen conserving device gives it a conservation ratio over continuous flow oxygen of approximately 4:1. This provides up to 10 hours of use at a setting of 2. The portable unit can be refilled in about 40 seconds from the home reservoir, which typically lasts four to six weeks between refills.

Nebulizer - is a type of inhaler that provides a fine mist of medication to the lungs. This is performed by breathing the medicated mist through a mouthpiece or mask attached to the nebulizer device, which is driven via a plastic tubing, attached to the compressor unit. The medications used in nebulizers help you by loosening the mucus in the lungs so it can be coughed out more easily, and by relaxing the airways so that more air can move in and out of the lungs. Nebulizer treatments take approximately 15 minutes to deliver the medication and are prescribed by your physician.

Pediatric Nebulizer - A special breathing device usually used 3 or 4 times daily as needed; or as directed by your doctor. It works in the lungs by opening breathing passages to make breathing easier. This device is intended for use in children but may also be used for adults requiring smaller doses.

Oxygen Concentrators - electronically powered device with a series of filters that extract oxygen from room air. Also, a backup system, usually a stationary compressed gas system must always accompany a concentrator in case of power failure or other emergency. Regular household current is sufficient for its use. In limited cases, a humidifier bottle may be necessary to increase moisture to the oxygen as it passes through the tubing to the mask or cannula.
Common Diagnoses:
        - Chronic Obstructive pulmonary diseases (COPD)
        - Emphysema
        - Asthma
        - Chronic Bronchitis
        - Lung Cancer
        - Acute Myocardial Infarction
        - Acute Pulmonary Heart Disease
        - Congestive Heart Failure
        - Viral Pneumonia
        - Bacterial Pneumonia
        - Bronchlectasis

Oxygen Conservers - are types of regulators, which conserve the amount of gaseous oxygen in portable cylinders. Oximetry testing is required to ensure proper oxygen saturation during use of a conserver.

Portable Oxygen Systems - incorporate either the electronic conserving device, the pneumatic conserving device, or standard flow regulators. These systems provide individuals with a convenient, lightweight supply of oxygen. Systems are available with one or multiple M4, M6, M9, MD, or ME cylinders, fiber-wrapped cylinders, shoulder, horizontal, backpack, or fanny pack style carrying bags, cart, regulator, cannula, and supply tubing. All systems are also available with a straight post valve, handtight or a toggle CGA870 valve.

Ventilators - An automatic mechanical/pneumatic device designed to reduce or provide the work required to move gas into and out of the lungs.

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Mobility Products

Canes - adjustable height canes can improve balance and reduce fatigue. Travel canes can fold up and be carried in a travel case. Standard crook canes are lightweight and durable to help improve balance and reduce fatigue . Quad canes are used when there is a need for additional stability. Quad canes have a base with four legs, affording greater stability than straight canes. Quad canes can be ordered with narrow or wide bases.

Crutches - Standard adjustable crutches are lightweight and easily adjust to size. Forearm crutches have contoured arm cuffs for extra comfort and stability.

Lifts/Seating Systems - Power lift chairs gently move the person to a standing, seated, or reclined position.

Patient Lifts - (power or hydraulic) for assistance with patient transferring. Lift/commode is an FDA registered medical device, ideal for people with musculoskeletal or neuromuscular limitations. It is motorized and designed to operate as a lift system and as an adjustable-height commode. It can be used as a bedside commode (helps reduce bedpan use) or as a transfer system to move a person from a bed to a seated or standing position.

Ramps - portable ramps for wheelchairs and scooters roll up for easy carrying with storage bag. Scooter ramps have side rails and center panels that slide easily into place, locking securely to provide a solid drive surface. Suitcase ramps are convenient and compact, fold up easily and have a built-in carrying handle. Telescopic channel ramps each extend to be used on steps, vans, or curbs. For storage, simply pick up each rail and depress the guide buttons to collapse. Chair lifts allow you to lift and carry your power chair fully assembled.

Walkers - are available in a variety of styles to meet individual needs. Folding, adjustable walkers can be easily transported in vehicles. Hemi-walkers allow for one-hand utilization. Wheeled walkers minimize lifting. Many accessories, such as walker trays, baskets or pouches are available.

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Disease States:

Hypertension: Blood pressure greater than or equal to 140/90 mmHg.

COPD: Chronic obstructive pulmonary disease (COPD) is a catch-all term for a number of respiratory diseases. The diseases of COPD include chronic bronchitis, pulmonary emphysema, asthma, and bronchiectasis (a chronic inflammatory or degenerative condition of one or more bronchi or bronchioles marked by dilatation and loss of elasticity of the walls).

Asthma: Hyper-responsive airways manifested by a narrowing of the airway.

Sleep Apnea: a breathing disorder characterized by brief interruptions of breathing during sleep.

    1. Central Sleep Apnea: Occurs when the brain fails to send the appropriate signals to the breathing muscles to initiate respirations.
    2. Obstructive Sleep Apnea: Occurs when air cannot flow into or out of the person’s nose or mouth, although efforts to breathe continue.

Diabetes: Disease in which blood glucose levels are above normal

    1. Type 1 diabetes: diabetes of a form that usually develops during childhood or adolescence and is characterized by a severe deficiency of insulin secretion resulting from atrophy of the islets of Langerhans and causing hyperglycemia and a marked tendency toward ketoacidosis -- called also insulin-dependent diabetes, insulin-dependent diabetes mellitus, juvenile diabetes, juvenile-onset diabetes, type 1 diabetes mellitus
    2. Type 2 diabetes: a common form that develops especially in adults and most often in obese individuals and that is characterized by hyperglycemia resulting from impaired insulin utilization coupled with the body's inability to compensate with increased insulin production -- called also adult-onset diabetes, late-onset diabetes, maturity-onset diabetes, non-insulin-dependent diabetes, non-insulin-dependent diabetes mellitus, type 2 diabetes mellitus

CHF: Heart failure in which the heart is unable to maintain adequate circulation of blood in the tissues of the body or to pump out the venous blood returned to it by the venous circulation

Urinary Incontinence: Incontinence is the inability to control the passage of urine. This can range from an occasional leakage of urine to a complete inability to hold any urine. Urinary incontinence affects approximately 13 million people in the United States and is more common in women than in men. It occurs in 10 percent to 25 percent of women younger than age 65 and in 15 percent to 30 percent of women older than age 60 who do not live in nursing homes. Among nursing home residents, incontinence is even more common, affecting more than 50 percent of female patients.

Cystic Fibrosis (CF): A life-threatening disorder that causes severe lung damage and nutritional deficiencies. CF is an inherited (genetic) condition affecting the cells that produce mucus, sweat, saliva and digestive juices. Normally, these secretions are thin and slippery, but in CF, a defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts, and passageways, especially in the pancreas and lungs. Respiratory failure is the most dangerous consequence of CF. Each year approximately 3,200 white babies are born in the United States with CF. The disease is much less common among black and Asian-American children. Most babies born with CF are diagnosed by age 3, although mild forms of the disease may not be detected until the third, fourth, or fifth decade of life. In all, about 30,000 American adults and children are living with the disorder. Although there's still no cure, the emerging field of gene therapy may someday help correct lung problems in people with CF.

Hepatitis C HCV (Hepatitis C Virus): An inflammation of the liver causing soreness and swelling. It is the most common chronic blood-borne infection in the United States. The hepatitis C virus usually is transmitted through contact with infected blood, most commonly by sharing needles during intravenous drug use, or getting a blood transfusion before 1992. Hepatitis C also may be spread through unprotected sexual intercourse, but this is uncommon. Most people don't feel sick when they are first infected with hepatitis C. Instead, the virus stays in their liver and causes chronic liver inflammation.

Multiple Sclerosis: A chronic, potentially debilitating disease that affects your brain and spinal cord (central nervous system). The illness is probably an autoimmune disease, which means your immune system responds as if part of your body is a foreign substance.In MS, your body directs antibodies and white blood cells against proteins in the myelin sheath surrounding nerves in your brain and spinal cord. This causes inflammation and injury to the sheath and ultimately to your nerves. The result may be multiple areas of scarring (sclerosis). The damage slows or blocks muscle coordination, visual sensation, and other nerve signals.The disease varies in severity, ranging from a mild illness to one that results in permanent disability. Treatments can modify the course of the disease and relieve symptoms.An estimated 400,000 Americans have MS. It generally first occurs in people between the ages of 20 and 50. The disease is twice as common in women as in men.

Muscular Dystrophy: A group of rare inherited muscle diseases in which muscle fibers are unusually susceptible to damage. Muscles, primarily your voluntary muscles, become progressively weaker. In the late stages of muscular dystrophy, fat and connective tissue often replace muscle fibers. In some types of muscular dystrophy, heart muscles, other involuntary muscles and other organs are affected. There are many forms of muscular dystrophy, some noticeable at birth (congenital muscular dystrophy), others in adolescence (Becker MD), but the 3 most common types are Duchenne, facioscapulohumeral, and myotonic. The various types of the disease affect more than 50,000 Americans. There's no cure, but medications and therapy can slow the course of the disease.

Osteoporosis: A disease in which the density and quality of bone are reduced, leading to weakness of the skeleton and increased risk of fracture, particularly of the spine, wrist, hip, pelvis, and upper arm. Osteoporosis and associated fractures are an important cause of mortality and morbidity.

In many affected people, bone loss is gradual and without warning signs until the disease is advanced. Osteoporosis is also known as "the silent crippler" because a person usually doesn't know they have it until it's too late. Unfortunately, in many cases, the first real "symptom" is a broken bone. Loss of height - with gradual curvature of the back (caused by vertebral compression fractures) may be the only physical sign of osteoporosis.

In the United States, osteoporosis causes more than 1.5 million fractures every year — most of them in the spine, hip, or wrist. And although it's often thought of as a women's disease, osteoporosis affects many men as well. About 8 million American women and 2 million American men have osteoporosis, and nearly 18 million more Americans may have low bone density. Even children aren't immune.

Parkinson's Disease: Parkinson's disease belongs to a group of conditions called movement disorders. It is both chronic, meaning it persists over a long period of time, and progressive, meaning its symptoms grow worse over time.

Parkinson's disease occurs when a group of cells, in an area of the brain called the substantia nigra, that produce a chemical called dopamine begin to malfunction and eventually die. Dopamine is a neurotransmitter, or chemical messenger, that transports signals to the parts of the brain that control movement initiation and coordination. When Parkinson's disease occurs, for unexplained reasons, these cells begin to die at a faster rate and the amount of dopamine produced in the brain decreases. The four primary symptoms are:

  • tremor of the hands, arms, legs, jaw, and face;
  • rigidity or stiffness of the limbs and trunk;
  • bradykinesia or slowness of movement, and
  • postural instability or impaired balance and coordination.

 

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Wheelchairs and Components:

Manual Wheelchairs

Lightweight/Sports Chairs - The most popular type of wheelchair for everyday use for a person with good upper body mobility is the lightweight manual wheelchair. Lightweight chairs provide maximum independence of movement with a minimum of effort. Many active wheelchair users also prefer the sportier look of the lightweights compared with the more standard-looking everyday chair. It should be noted, however, that heavy or obese persons may be unable to use these types of chairs because the lighter weight of the frame results in a reduced user capacity as compared to standard everyday chairs. Once used primarily by wheelchair athletes, the lightweight chair today is used by people in virtually all walks of life as a preferred mode of assisted mobility. Three-wheeled chairs, also developed for such sports as tennis and basketball, are also an everyday chair alternative.

Standard/Everyday Chairs - Some wheelchair users still prefer or require a standard wheelchair, which is characterized by a cross-brace frame, built-in or removable arm rests, swing-away footrests, a mid- to high-level back, and push handles to allow non-occupants to propel the chair.

Child/Junior Chairs - Children and young adults need chairs that can accommodate their changing needs as they grow. In addition, it is important that wheelchairs for children or teens be adaptable to classroom environments and be "friendly looking" to help the user fit more readily into social situations. Manufacturers today are becoming increasingly sensitive to these market demands and are attempting to address them with innovative chair designs and a variety of "kid-oriented" colors and styles.

Specialty Chairs - Because of the diverse needs of wheelchair users, wheelchairs have been designed to accommodate many lifestyles and user needs. Hemi chairs, which are lower to the floor than standard chairs, allow the user to propel the chair using leg strength. Chairs that can be propelled by one hand are available for people who have paralysis on one side. Oversized chairs and chairs designed to accommodate the weight of obese people are also offered. Rugged, specially equipped chairs are available for outdoor activities.  Aerodynamic three-wheeled racing chairs are used in marathons and other racing events. Manual chairs that raise the user to a standing position are available for people who need to be able to stand at their jobs, or who want to stand as part of their physical conditioning routine. These and other specialized chair designs generally are manufactured by independent wheelchair manufacturers who are trying to meet the needs of specific target markets.

Institutional/Nursing Home/Depot Chair - The least expensive type of chair available, an institutional chair, is designed for institutional usage only, such as transporting patients in hospitals or nursing homes. It is not an appropriate alternative for anyone who requires independent movement, as the institutional chair is not fitted for a specific individual. These types of chairs are now also used as rental chairs and by commercial enterprises (such as grocery stores and airports) for temporary use.

Manual Wheelchair Components

Frame - The two most common types of frames currently available are rigid frame chairs (where the frame remains in one piece and the wheels are released for storage or travel), and the standard cross-brace frame (which enables the frame to fold for transport or storage).

Upholstery - must withstand daily use in all kinds of weather.   Consequently, manufacturers provide a variety of options to users, ranging from cloth to new synthetic fabrics to leather. Many manufacturers also offer a selection of upholstery colors, ranging from black to neon, to allow for individual selection and differing tastes among consumers.

Seating System - are sold separately from the wheelchairs themselves, as seating must be chosen on an individual basis. It is important when selecting a wheelchair or a seating system to ensure that the two components are compatible.

Brakes - or wheel locks are available in several different designs, and can be mounted at various heights to maximize convenience to the user.

Wheels/Tire - Most wheelchairs use four wheels, with two large wheels at the back and two smaller ones (casters) at the front. The standard tire used for the rear wheels on most wheelchairs is a pneumatic tire, for which the standard size is 24 inches. Smaller and larger sizes, however, also are available. Many manufacturers now also offer other types of tires--such as solid tires, semi-pneumatic, or radial tires--at extra cost. Mag wheels and off-road wheels also are options on some chairs. Casters, too, vary in size (ranging from six to eight inches in diameter) and composition (pneumatic, solid rubber, plastic, or a combination of these).

Footrests - usually are incorporated into the frame of the chair as part of the design. Cross-brace folding chairs often have footrests which swivel, flip up, and/or can be removed.

Armrests - Many lightweight manual chairs are designed to be used without armrests.   The absence of armrests makes it easier for the user to roll up to a desk or table, and many active wheelchair users prefer the streamlined look of a chair with no armrests. However, armrests are helpful if the user has difficulty with upper body balance while seated. Armrests come in a variety of styles including desk length (to allow the user closer access to desks and tables) or full length and both types may be flip-up, fixed, or detachable.

Powered Wheelchairs

A powered wheelchair must be selected carefully in order to ensure it not only meets the needs of the individual who will use it but also represents good value for the money being invested in it. Physical considerations include posture, strength, sensation, visual acuity and perception, and the ability to learn how to use the wheelchair safely. A functional evaluation should include actual use of the wheelchair in everyday settings; an evaluation of the individual's ability to get in and out of the wheelchair; and the ability to perform needed activities from the wheelchair. Transportation to and from various settings also is an important consideration: Is a van available to transport the individual in the chair, or is it necessary for the chair to fold or disassemble in order to be carried in an automobile trunk?

Powered Wheelchair Components

Frames - Many traditional-style models utilize the traditional cross-brace frame which allows the chair to be folded or collapsed for storage and transport once the batteries have been removed. Other traditional models and some power base chairs disassemble for transport. A number of chairs, however, are designed to be transported while carrying the user; consequently, they do not fold or disassemble.

Upholstery - for wheelchairs must withstand daily use in all kinds of weather.  Consequently, manufacturers provide a variety of options to users, ranging from cloth to new synthetic fabrics to leather.  Many manufacturers also offer a selection of upholstery colors, ranging from black to neon, to allow for individual selection and differing tastes among consumers.

Seating System - Sold separately from the wheelchairs themselves, as seating must be chosen on an individual basis. It is important when selecting a wheelchair or a seating system to ensure that the two components are compatible. Power base chairs, because of their more modular construction, frequently feature customized chair-style seating systems.

Brakes - Most powered chairs utilize a dynamic braking system in which the motor and brakes work together to slow and stop the chair when the joystick or other controller is released, and which automatically engages the brakes when the power is off or when the chair is not being powered in a forward or reverse motion with the controller.

Wheels/Tires - Power base chairs typically use four wheels of the same size, usually 8 to 10 inches in diameter. These chairs may have pneumatic, semi-pneumatic, or solid tires.

Footrests - A variety of footrest assemblies are available on both types of wheelchairs.  They may be a rigid single unit, 90 degree-90 degree platforms, folding, flip-up, detachable, adjustable length, hemi- height, or have a combination of features.

Armrests - Armrests also come in several styles or with a combination of features. They may be full- or desk-length, or wraparound, and they may be fixed, removable, pivoting, and/or adjustable height.

Controls - Powered chairs generally include as a standard feature a manually controlled joystick to regulate the chair's speed and direction. However, most manufacturers offer customized control options to accommodate the varied abilities of the user, including sip-n-puff systems, head and chin switches, push-button controls, trackballs, and tillers. Many chairs also have programmable control features which allow the user or a dealer to adjust or set the chair's speed and control limits as the user's abilities change.

Drive System - the means by which power is delivered to the chair's wheels. Standard drive systems include gear drive, direct drive, and belt drive. The type of drive system affects the power available to propel the chair and the amount and type of maintenance the chair requires.

Batteries - A determining factor in the range and power of a powered chair. Generally, the larger the chair's batteries, the greater the power and the longer the chair's range between charges. Many chairs require two rechargeable 12-volt batteries. Most wheelchairs utilize U1, group 22 or 24 batteries, although other batteries are also used. More manufacturers are designing chairs around the group 24 battery because it affords a longer range. The type of battery required is also an important consideration in terms of safety, maintenance, and transport. Powered chairs may utilize lead acid, gel cell, or sealed wet batteries. Gel cell batteries require the least maintenance and have less danger of leaking than do the other battery types. Gel cell batteries are also required by a number of airlines when transporting powered
chairs.

Special Powered Features - Powered chairs may offer specialized powered features to meet the user's needs, either as customization or options on a standard chair or as a chair designed specifically for a particular purpose. Among the available features are elevating and lowering seats, and reclining and/or tilt-in-space seats.  Specialized chairs have the capacity to raise the user to a standing position, to negotiate stairs, or to be used as a lift or in transferring.

Scooters

Typically, scooter users have some ability to walk, but are limited in distance or stamina--stroke survivors or people with milder forms of cerebral palsy, multiple sclerosis, post-polio syndrome, arthritis, and cardiac conditions, among others. Scooters are used to increase and extend the range of personal mobility and help conserve energy. Scooter users often have difficulty propelling manual wheelchairs, but do not require the sophisticated electronic controls and seating systems common in powered wheelchairs.

A number of other physical factors must also be evaluated when determining whether a scooter is an appropriate mobility aid. A scooter user generally must be able to sit upright for extended periods and have sufficient seated balance to maintain an erect posture. Further, sufficient upper body and arm strength to master the controls and steer and maneuver the unit are required.  In addition, uncorrected vision disabilities, or conditions which may cause confusion or memory loss or which inhibit proper safety awareness may render a scooter an unsatisfactory mobility aid.

Scooter Configurations and Components

Base Unit - is basically the body of the scooter. Generally it consists of a steel, aluminum, or composite frame with a fiberglass or composite floor to support the feet and batteries. Some scooter bases also include a shroud over the front wheel and drive head, creating a dashboard for the unit. The base also includes the wheels and the drive train. In some scooters, the seat post is also part of the base. The base unit is the primary determinant of whether the scooter is designed for indoor or outdoor use, the vehicle's maneuverability, the size of its wheelbase, its ground clearance, its turning radius, and its overall dimensions.

A scooter should not tip easily during sharp turns or on inclines such as curb cuts (if the scooter is designed for outdoor use).  Anti-tip wheels should be included as part of the frame to help support and stabilize the scooter. On front-wheel drive units, anti-tips are often located laterally just behind the front wheels because they generally lack the power for steep inclines. Because most rear-wheel drive scooters are intended to negotiate more rugged terrain, they are usually equipped with rear anti-tips to support the scooter on hills. Side anti-tip wheels are sometimes offered as options. It should be noted that lateral anti-tippers may cause difficulties on curb cuts and ramps.

On some scooters, the base unit may be comprised of modular units or may otherwise be disassembled for transport and storage. These same features may also allow the scooter to be converted from three- to four-wheeled models and/or from indoor to outdoor use.

Drive Train, Brakes, and Power System - The drive train is an integral part of the base unit and provides either front- or rear- wheel drive for the scooter. Front-wheel drive is usually found on smaller scooters designed primarily to be used indoors or outdoors on flat, paved surfaces. The motor of the front-wheel drive scooter is located over the front wheel and drives only that wheel. Because of the motor and wheel configuration, front-wheel drive scooters are usually direct-drive units, eliminating chains and belts. However, this also means that the front wheel pulls the weight of the unit and the rider. Consequently, these types of scooters have a lesser capacity to move their load than do rear-wheel drive models, and are therefore less capable of handling hills, curb cuts, and other outdoor terrain. This is compounded by the fact that front-wheel drive models generally have smaller motors, causing them to have a shorter range, less speed and power, and a smaller rider weight capacity.

Rear-wheel drive scooters are powered by motors connected to the rear axle, either via a chain, a belt, a transaxle unit, or some combination.  Because the scooter is driven by the rear wheels, they push the combined weight of the unit and the rider, rather than pull it. The combined weight of the rider, the motor, and the batteries over the rear wheels, generally create better traction than that usually provided by front-wheel drive models.  The increased traction combined with the more powerful motors used on rear-wheel drive scooters results in better climbing ability. The units also have a greater maximum speed, a longer travelling range between battery charges, and a larger rider weight capacity. These scooters have a wider wheel base and a greater overall length, making them less maneuverable and rendering some models unsuitable for indoor use. They may also be too large for van or bus lifts.

Brakes - most rear-wheel drive scooters utilize an electronic or electro-mechanical dynamic, regenerative braking system. This type of braking system works in tandem with the motor, first to slow and then stop the vehicle when the pressure is released on the thumb levers or the controls are otherwise disengaged.  When the scooter is not being powered forward or in reverse, the brakes are engaged, thus preventing the scooter from moving. During the application of the brakes, excess power from the motor is channeled to the batteries, providing recharging. Because the brakes are engaged when the scooter is being actively powered, most scooters with this braking system are equipped with a clutch on the motor or another release lever to manually disengage the brakes to allow the scooter to be pushed in case of emergency.

Some scooters also use disc brakes or disc brakes in combination with the braking system discussed above. Some scooters--usually front-wheel drive models--are not equipped with electronic or electro-mechanical brakes. In the absence of a brake system, a manual parking brake applied by lever to a rear wheel is provided. Manual parking brakes may also be offered either as optional or standard features on other scooters to provide extra braking on hills and inclines.

Batteries - most scooters utilize 12- or 24-volt motors and electrical systems generally with one or two 12-volt batteries to power the drive train and controls.  Twelve-volt systems are most frequently found on front-wheel drive scooters, and usually require one 12-volt battery, although two six-volt batteries are sometime used. Some manufacturers offer add-on units for 12-volt systems which allow them to utilize two batteries to extend the scooter's range between charges, although speed and power are not affected. Rear-wheel drive systems generally require two twelve-volt batteries to power 24-volt systems.

These batteries are "deep cycle" batteries intended for wheelchairs and scooters and generally last between 12 and 18 months, although with conservation and regular charging, longer life may be achieved. Deep cycle batteries are designed to provide a steady supply of power and be discharged and recharged on a regular basis. Automotive and marine batteries, on the other hand, are designed to be starter batteries, providing short bursts of power only. Consequently, marine and automotive batteries should never be substituted for deep cycle batteries.

There are three basic types available for use with scooters: Lead acid (or wet cell) batteries, sealed lead-acid batteries, and gel cell batteries.  Lead acid batteries are the least expensive of the three types, but they also require the most maintenance.  In addition to regular charging, electrolyte and water levels must be checked regularly, with water added frequently to maintain appropriate levels. Because these batteries are not sealed, there is danger of acid spillage and explosion if the batteries are not handled properly. Despite these potential problems, lead-acid batteries provide the benefits of a two- to six-month longer battery life and up to a ten percent greater running time than other battery types.   Sealed lead acid batteries are maintenance-free versions of these batteries.   Because they are sealed in cases, it is unnecessary to add water and the danger of acid spillage is reduced or eliminated. The cases are vented to prevent gas build-up that can lead to an explosion. Finally, gel cell batteries are the most commonly used battery type on scooters. They are sealed in their cases and require no maintenance other than regular charging. Gel cells are the safest of the battery types, with no danger of spillage and limited risk of explosion. However, gel cells are more expensive, and may have a somewhat shorter life than other battery types.

Wheels and Tires - The size of the wheels and tires on a scooter have a direct effect on the scooter's ability to surmount obstacles and its stability. Scooters are generally equipped with six-, eight-, or ten-inch wheels, although other sizes may also be used. Some models use the same size wheels both front and rear, while others may have smaller wheels in front and larger rear wheels. Smaller wheels are generally found on front-wheel drive scooters intended for indoor use.  As a rule, the intended use of the scooter should dictate the size of the wheels and tires. The larger the wheels, the more stable the unit. Similarly the larger and wider the tires, the greater the unit's traction and capacity to manage such obstacles as curb cuts and uneven outdoor terrain.

Several types of tires are available for scooters. Manufacturers generally offer a specific tire as standard equipment, with others available as extra-cost options. Pneumatic tires include air-filled tubes and are similar to those found on automobiles. Air pressure should be checked regularly to maintain proper levels, and tires may need to be replaced if punctured. The addition of an anti-flat compound before inflation reduces the risk of tires going flat. They provide good shock absorption when properly inflated. Foam filled tires are similar to pneumatic tires, but include foam inserts rather than air-filled tubes. These tires cannot be deflated and, therefore, require less maintenance. They may be more expensive than pneumatic tires and may not offer a consistently comfortable ride. The least expensive tire option is the solid rubber tire. These tires require the least maintenance, but provide minimal shock absorption and are intended primarily for indoor use. 

Seating - The most common seat found on scooters is a chair-style seat similar to those found on boats. The basic seat is molded hard plastic or fiberglass, but most manufacturers offer a padded-seat option, usually with a choice of vinyl or fabric upholstery. Vinyl upholstery is frequently less expensive, but because it is a slipperier surface, it may not be the best choice for those whose disability makes it difficult to maintain position or balance.

Armrests - are another consideration in seating. Some scooters offer armrests only as an option; others offer fixed armrests as standard with flip-up armrests available.

Tiller - The control and steering mechanism for the scooter, usually containing the controls to drive the scooter forward or in reverse, as well as steering the front wheel or wheels. Most scooters offer one type of standard tiller with other controllers available as options. Possibilities include thumb levers, loop handles, joysticks, and others. Thumb levers are the most common controls, allowing the user to keep both hands on the handle bars while using the left thumb to power the scooter in reverse and the right to power the scooter forward. The amount of pressure applied to the lever will determine the speed of the vehicle (unless it is equipped with a proportional speed control). Consequently, a fair amount of hand control is necessary for safe operation. Finger control levers or a joystick may be alternatives. Some manufacturers may also be able to adapt controls to user requirements at extra cost.

The tiller itself is often an upright post attached to the front wheel. However, it is also becoming common to find flexible, accordion-style tillers which can be adjusted for height and/or position. This not only enables the user to place the tiller in the most comfortable position while driving, but also allows it to be moved up and out of the way during transfers. In the absence of a dashboard or shroud over the front wheel, a control box with the key lock, battery level indicator, speed controller, and other features may be
affixed to the tiller handlebars.

Since a joystick controls both speed and direction, scooters equipped with them generally do not have the post-and-handlebar tiller; the joystick is usually attached to an armrest or to an armrest extension, with a choice of right or left mounting. While this frees the space in front of the user and may accommodate easier transitions for some, the lack of handlebars may make transfers more difficult for others.

Other Accessories - In addition to the standard features common to all scooters discussed above, manufacturers offer a variety of standard features and optional accessories.  Most scooters are equipped with a key lock for turning the scooter on and off, thus conserving battery life and preventing unauthorized use; a battery-level indicator and a proportional speed controller to limit maximum speed.

A wide range of accessories also are offered on most scooters, such as crutch and cane holders, oxygen carriers, front and rear baskets, trailers, headlights, tail lights, horns, canopies, and others. Some manufacturers even offer sidecars to allow an additional passenger. As when purchasing a car, options and additional features increase the base cost of the unit, but accessories should be evaluated in light of their capacity to create a mobility aid which provides maximum user independence. At the same time, it should be kept in mind that some options may decrease battery life, maneuverability, and/or travel range.

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Other Home Medical Equipment

Bariatric products are designed to have a weight capacity of 300 pounds (or more) for those who need that extra support. Bariatric chairs maximize the patient's ability to sit and stand with reduced effort, and lessens the chance of lifting injury to the caregiver.

Bariatric beds have extra bracing integrated into the home care bed frame, along with a wider surface and truss assembly, in order to provide maximum support.

Portable lifting cushions - provide that extra lift needed to help you get in and out of any armchair on your own by shifting your weight forward and pushing off gently with your arms and/or legs. The pneumatic lift will help to gently raise you up to an almost standing position. The cushion is portable and weighs approximately 9 pounds and flattens quickly for easy transport.

Commodes - 3-in-1 Commodes are adjustable and include back, pail w/lid, toilet seat, and cover. Some can be used as a free-standing commode or a raised toilet seat. Lift/commode is a FDA registered medical device, ideal for people with musculoskeletal or neuromuscular limitations. It is motorized and designed to operate as a lift system and as an adjustable height commode. It can be used as a bedside commode (helps reduce bedpan use) or as a transfer system to move a person from a bed to a seated or standing position.

Compression Stockings - Problems with the veins of the leg occur in both men and women of all ages but certain factors increase the risk of venous problems. Health conditions, lifestyle habits, heredity, injury, surgery, age, and pregnancy all play a role. A broad range of compression hosiery from knee, thigh high, waist chaps, open toe and closed toe are manufactured to meet your needs. For more information: http://www.jobst-usa.com/

Continuous Passive Motion (CPM) - devices are available for synovial joints (hip, knee, ankle, shoulder, elbow, wrist, and TMJ) following surgery or trauma (including fracture, infection, etc). The device moves the affected joint continuously on a 24-hour basis, without patient assistance. The device is held in place across the affected joint by Velcro straps. An electrical power unit is used to set the variable range of motion and speed. The speed and range of motion can be adjusted depending on joint stability, patient comfort level, and other factors assessed intraoperatively.

Diabetic Supplies - Blood glucose monitoring - there are a variety of systems available that allow testing on arms, fingers or thighs, with fast and accurate results and minimal cleaning required.

Environmental Control Units - Permit remote control of electronic devices in the immediate surroundings. A person can independently turn lights, radio, and television on and off, answer or initiate phone calls, and unlock a door. Essentially any aspect of the environment can be controlled depending upon the system's complexity. For more information and products: http://www.makoa.org/ecu.htm

Hospital Beds - allow for positioning and safety not possible with standard beds. There are basically three (3) types of hospital beds available for home use: Semi-Electric Beds - allow for raising and lowering the head and the knee break through the use of an automatic hand-held control. Raising the entire bed height is accomplished through use of a manual crank. Manual Beds - allow for raising and lowering the head of the bed and the knee break through the use of a manual crank. Full or half-side rails are available. Full-Electric Beds - allow for the raising and lowering functions of the head and knee break, and the entire bed height adjustment is operated by a hand-held control.

T.E.N.S. dual channel units - a transcutaneous electro-nerve stimulator; pain control that goes where you do. A small medical device slightly larger than a beeper, attaches to your pants or belt and helps alleviate pain while you wear it.

T.E.N.S. units have been dispensed by doctors to their patients for home use. They operate on a 9v. transistor battery and have small wires and pads that adhere to a painful area and alleviate pain. Tiny free nerve endings secrete a chemical called "substance P" that transmits pain signals to our brain. T.E.N.S. units artificially stimulate free nerve endings, thereby depleting them of substance P, literally stopping the pain signal in its tracks.

Wound V.A.C Therapy - or negative pressure wound therapy uses negative pressure through a controlled suction device  to close large wounds and promote faster healing. This patented, FDA-approved device is composed of a sophisticated pump, hoses, and monitoring system held within a portable compact case weighing less than 20 pounds. It is recognized as an advanced line therapy alternative for patients when traditional dressing changes are not effective. It is a method that is  considered among recovering patients in hospitals, nursing homes, and other home health care settings. It meets the needs of most cost-effective modalities and an estimated 5 million American patients suffering from chronic or acute wounds.

For more information on Wound V.A.C Therapy & wound care management reference -
http://www.kci1.com/87.asp

Ostomy Supplies - Pouching system s- may include a one-piece or two-piece system. Both kinds include a faceplate/flange (barrier or wafer) and a collection pouch. The pouch (one-piece or two-piece) attaches to the abdomen by the faceplate/flange and is fitted over and around the stoma to collect the diverted output, either stool or urine. The barrier is designed to protect the skin from the stoma output and to be as neutral to the skin as possible

- One-piece pouching system - the ostomy pouch and skin barrier are joined together permanently. The pouch and skin barrier are applied and removed together-in one piece. Easy to apply and remove and more flexible than a two-piece pouching system.

- Two-piece pouching system, the ostomy pouch and skin barrier are separate . The pouch can be removed without removing the skin barrier. Because it is separate from the pouch, the skin barrier can be more easily positioned around the stoma.

Pediatric pouching systems are available as either one-piece products or two-piece products and are designed for premature babies, infants, and children. These systems can also be used to manage adult conditions such as small wounds, drain sites, and fistulas. Irrigation systems - Some colostomates can "irrigate," using a procedure analogous to an enema. This is done to clean stool directly out of the colon through the stoma. This requires a special irrigation system, consisting of an irrigation bag with a connecting tube (or catheter), a stoma cone, and an irrigation sleeve. A special lubricant is sometimes used on the stoma in preparation for irrigation. Following irrigation, some colostomates can use a stoma cap, a one- or two-piece system which simply covers and protects the stoma. This procedure is usually done to avoid the need to wear a pouch.

Urinary pouching systems - urostomates can use either one or two-piece systems. However, these systems also contain a special valve or spout which adapts to either a leg bag or to a night drain tube connecting to a special drainable bag or bottle.

For more information on ostomy and ostomy supplies:
http://www.uoa.org/ostomy_main.htm
http://www.hollister.com/us/

Bili Lights - (phototherapy) used to help infants with jaundice, a yellow coloring of the skin and eyes related to abnormal liver function.

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